The Compass 2015 by Venture Publishing

CHAPTER 1:NEUROSURGERY PEDIATRIC

The Compass

Illustration by CHRISTIANE BEAUREGARD

Table of Contents 6

INTRODUCTION

FOREWORD: Dr. Vivek Mehta

PREFACE: Melissa’s Story

SPONSOR

Chapter 1: Diagnosis 13 SECTION 1.1: RECEIVING THE DIAGNOSIS • Questions to ask • Worksheet for your child’s diagnosis 16 SECTION 1.2: UNDERSTANDING THE DIAGNOSIS • An overview of the brain and spinal cord • Tests and procedures • Who’s who on the medical team • Common pediatric neurosurgical diagnoses 26 Achondroplasia 27 Arachnoid cyst 27 Arteriovenous malformations 28 Brain abscess 29 Cerebral aneurysms 30 Brain and spinal tumours 31 Cerebral palsy 33 Chiari malformations 34 Craniosynostosis 37 Epilepsy 39 Hydrocephalus 40 CSF shunts 43 Intracranial hemorrhage 44 Moyamoya disease 45 Spina bifida 46 Syringohydromyelia (syrinx) 47 Occult spinal dysraphisms (OSD)/tethered cord

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Chapter 2: Hospitalization & Surgery 53

SECTION 2.1: PREPARING FOR ADMISSION • Talk to your child • Pre-admission clinic (PAC) visit before surgery • Packing checklist

SECTION 2.2: VISUAL SCHEDULE • My neurosurgery operation at the Stollery Children’s Hospital

SECTION 2.3: HOSPITALIZATION • The day of your child’s surgery • Pain and pain medications in hospital • Resources in hospital • Accommodations

SECTION 2.4: GOING HOME • Home care and follow-up • Wound care and complications • Common post-operative issues • Taking medications • Helpful hints • Preparing for outpatient clinic

SECTION 2.5: REHABILITATION • Glenrose rehabilitation • Orthotist directory

SECTION 2.6: PROFILES • Medical profile • Medic alert identification and jewelry • Hope stones

Chapter 3: Education & Assistance

SECTION 3.1: SCHOOL • Early education • School-age children • Effective communication with teachers • Inclusion • Advocacy resources for school and community • Information-sharing profile

SECTION 3.2: FINANCIAL ASSISTANCE • Government programs • Savings plans • Charities and associations

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Chapter 4: Therapy, Fun & Products 97

SECTION 4.1: COMPLEMENTARY THERAPY • Physiotherapy, occupational therapy and speech therapy • Complementary therapy

SECTION 4.2: FUN • Accessible sports and programs • Funding for sports • Bike program • Special Edmonton summer events • Camp and adventure trips • Travel insurance

105

SECTION 4.3: SPECIALIZED PRODUCTS • Clothing, shoes and specialized products • Mom tips • This and that • Jack-of-all-trades

Chapter 5: Stories of Coping 113

SECTION 5.1: GRIEVING • The five stages of grief • Resources • Respite care

116

SECTION 5.2: REAL-LIFE STORIES • Stories from parents • Sibling support information and stories • Stories from family and friends • Stories of bereavement

Chapter 6: Additional Resources

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149

SECTION 6.1: ACKNOWLEDGEMENTS

152

SECTION 6.2: GLOSSARY OF TERMS

153

SECTION 6.3: OLIVIA’S JOURNEY

168

SECTION 6.4: MAPS OF THE STOLLERY CHILDREN’S HOSPITAL

Introduction WHY WE WROTE THIS BOOK

When we started this journey with our children, we were all overwhelmed by the amount of information we received: pamphlets, handouts, websites, notes and medical letters. Trying to sort through it was exhausting and, in most cases, unnecessary. As we met to discuss our journeys as parents and caregivers, we realized that we all had a similar experience. Why wasn’t the process streamlined? Why did it feel too large to tackle? Wouldn’t it be nice if there was a one-stop shop where parents could go to find the information they need? Wanting the parents and caregivers who came after us to have a different experience, we decided to write this book. We hope it will reassure you that this path has been travelled by others before, and you are not alone. We share with you the wisdom from our journeys and hope that this book - The Compass - will help you navigate your path.

HOW THE COMPASS CAN GUIDE YOU

This book is not intended to replace the information provided to you by the health care professionals involved in your child’s care. It is intended to be a complementary guide to help you travel through your child’s medical journey. Our intent is to provide medical and technical information about brain and spinal cord injury and surgery with a combination of straightforward language, personal stories and tangible real-life resources that you can access. While the book was written by parents in northern Alberta, and as such has references to local businesses and resources, we welcome families and caregivers of any child, in any location, to use this book. Understanding the basic information about your child’s condition, such as medical terminology, surgical procedures and complementary therapies, will alleviate some of the anxiety you may feel and will allow you to focus on your child.

COFFEE STAINS AND DOG EARS

We have written and organized this book to follow you step by step through your child’s illness. Throughout the book we have added real-world tips that help families. This book was designed not only as a resource guide that provides you with information, but also as a workbook to help you take notes and keep your information organized. We hope that you will take The Compass to your appointments, fill in the worksheets and store business cards and brochures in it. Please write in the margins, stuff a colouring book inside and don’t be afraid of coffee stains.

Ryan Girard

Authors: Melissa Da Silva BScN, RN Wendy Beaudoin NP, PhD Melody Willier Vivek Mehta MD, MSc, FRCSC

TEAM NEURO: (L-R) Melody Willier, Wendy Beaudoin and Melissa Da Silva are raising neurosurgery kids with expertise from their medical and personal networks.

The Compass

• Introduction •

Foreword When your child is diagnosed with a brain or spinal cord disorder, your family is forced into a foreign world. Your new reality is filled with many questions about your child’s health and future. Fear, hope and uncertainty are just a few emotions that may inundate you. Pediatric neurosurgery at the Stollery Children’s Hospital is a surgical service that prides itself on providing excellent clinical care. Our service collaborates with many other specialists to ensure that all the appropriate personnel are involved in your child’s care. The Neurosurgery Kids Fund (NKF) is a charitable organization whose mandate is to improve the journey our children and families will undertake. The Compass is the brainchild of mothers who thought that a roadmap would help meet the needs of their children. This document is designed to help parents understand the language and medical jargon they’ll hear. The Compass is also designed to help parents and families navigate within the health care system, to advocate for their loved one and to deal with the psychosocial aspects of a child’s illness. It is a manual that will help families during their journey and a testament to how a committed parent can improve our community. Vivek Mehta MD, MSc, FRCSC Pediatric Neurosurgeon

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• Introduction •

Preface I remember it like it was yesterday – sitting next to my son’s bassinet in the neonatal intensive care unit and feeling so alone. Here in the middle of a busy, loud room filled with nurses, doctors, families and friends, I was by myself. And I was scared.

Monika Melnychuk

Two days earlier, I delivered my second son by emergency cesarean section. He was beautiful and he was perfect, but he was also very, very sick. He had suffered a hemorrhagic stroke and was now fighting a life-threatening blood disorder. Denial. How could this happen to me? I couldn’t believe this was my reality. It wasn’t how I had planned it. I don’t remember the first few weeks. I was lost. I was numb. Then, I was angry. I was angry that God had done this to my son and to me. I was angry that the doctor had waited too long to deliver him. I was angry at myself. Did I do something wrong? Was this my punishment? There were so many painful and irrational thoughts. Even the most basic tasks were challenging. It was difficult to get up in the mornings, though for many days, getting up was all I could do. Weeks and months slowly went by and my boy made it home. We were given the “you just have to wait and see” speech. The waiting was unbearable. I entered into the next stage of grief: bargaining. I was making deals with God at every turn. I offered it all, including my own existence, in trade for my son’s health and recovery. I was desperate and depressed. I have always been an optimistic and outgoing person, but I wasn’t at this point. I entered into a dark, miserable place: crying spells, panic attacks and massive weight loss. I became reclusive and sad. I feared I wouldn’t be able to conquer these emotions. Seeking counsel, being honest and accepting help were some of the first steps in the right direction – the direction of healing and inner peace. My journey has led me back to a place where I can smile, laugh, love and have peace. There are still hard times but there is always hope. This is acceptance. Our wish is for you to know that you are not alone and to know that there are others who have felt your overwhelming fear. Take it one step at a time, have faith and always have hope. Melissa Da Silva BScN, RN

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• Introduction •

Compass Sponsor

The Building Trades of Alberta Charitable Foundation is proud to partner with the Neurosurgery Kids Fund and the Stollery Children’s Hospital Foundation in the production of this book.

Monika Melnychuk

The Compass is about people helping people – a philosophy that aligns perfectly with the Building Trades of Alberta. There is nothing more important than family. The Compass offers hope, direction and guidance to the families and patients who are presented with neurosurgical diagnoses. This book gains its strength from the people who have been on the journey before you, as they share their learning and discoveries. We look forward to continuing our partnership with the Neurosurgery Kids Fund and to continuing to develop The Compass.

The Compass

• Introduction •

A Strong Foundation

The Stollery Children’s Hospital Foundation is committed to funding excellence. Through collaboration with the Stollery Children’s Hospital, we’ve developed best practices and medical advancements that impact not only our community and patients, but children all around the globe. We are dreamers who take great pride in constantly striving to improve the experiences of those who visit our hospital, whether as a patient or in support of someone they love.

The business of magazines

The Compass is published for the The Neurosurgery Kids Fund by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca

Editors: Robbie Jeffrey, Mifi Purvis Design: Andrea deBoer Photography: Ryan Girard, Shona Nichols Illustration: Christiane Beauregard, Steve Adams, Monika Melnychuk, Peter Ryan, Caroline Hamel, Robert Carter, Charles Burke

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CHAPTER 1:

Diagnosis

Illustration by STEVE ADAMS

CHAPTER 1:

Diagnosis SECTION 1.1 RECEIVING THE DIAGNOSIS Nothing can prepare you for hearing that your child or loved one requires brain or spinal cord surgery. The amount of pain, fear and suffering this can cause is extraordinary. We know this because we too have been in a room across from a doctor, in complete disbelief and shock. Take a deep breath. Cry, if you need to. Take another deep breath. We begin this resource book with information that will help you understand your child’s diagnosis. Are you alone? Ask to call your partner or someone to come be with you. If your spouse is unable to attend, put them on speaker phone so they can hear the information first-hand from the doctor and ask questions. If your child’s doctor presents or sketches out diagrams, ask if you can have a copy or take pictures with your phone. This always makes it easier to explain to others. Request a copy of pertinent imaging or lab work. Turn to page 14 and fill in the blanks. You can research the diagnosis more easily if you have accurate information and spelling. It’s also important for you to get contact information. Ask everyone for a contact card and place it in the card holder located at the back of this book.

QUESTIONS TO ASK In a stressful and emotional time, it is nearly impossible to think of important questions. Here are some that might assist you: •W hat happens next? Ask for an explanation about the process. •W hen will this happen? •W hat is the time frame? •W hat did the scans show? •W hat other tests are needed? •W hat is the expected prognosis? • I s there anything else that I should ask? • I s there anyone else I should speak with before I leave? •A re there any other non-surgery options? • I f I have questions after I leave who can I contact?

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Neurosurgical diagnosis worksheet FOR YOUR CHILD’S DIAGNOSIS Diagnosis: Planned procedure: Alternative procedure:

Risks of surgery:

TEST/PROCEDURE #1

TEST/PROCEDURE #2

Test name:

Test date:

MEDICATIONS Name:

Name:

Purpose:

CONTACT INFORMATION/FOLLOW UP Doctor’s name:

Doctor’s name:

Specialty/service:

Follow-up appointment:

EXTRA NOTES

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NOTES FROM MEDICAL TEAM:

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SECTION 1.2 UNDERSTANDING THE DIAGNOSIS Let’s be honest – most of us have never really thought about the brain and spinal cord, except for the fact that we have one and we need to protect it. When your child or loved one is diagnosed with a neurological condition that may require neurosurgical intervention, it is helpful to understand the structure and functioning of the brain and spinal cord. In this section we have included an overview of the anatomy of the brain and spinal cord, along with a few diagrams to help you see what it looks like. A glossary of terms is located in chapter 6 for your reference.

An overview of the brain and spinal cord THE BRAIN

The brain sits inside the skull and is surrounded by a watery fluid called cerebral spinal fluid (CSF) that provides nutrients to the brain and cushioning for protection. There are two sides to the brain: the left hemisphere and the right hemisphere. The hemispheres are responsible for different things.

Corpus callosum is the part of the brain that allows the right and left hemisphere to communicate with each other.

PARIETAL LOBE FRONTAL LOBE MOTOR SPEECH AREA OF BROCA TEMPORAL LOBE PONS TOP VIEW

CEREBELLUM BRAIN STEM 1.1 The human brain

Steve Adams

OCCIPITAL LOBE

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• An Overview of the Brain and Spinal Cord •

THE CEREBRUM

The cerebrum is the largest part of the brain and has two hemispheres (left and right). The cerebrum is extremely important as it interprets sensory input from all body parts and controls body movements. The cerebrum is responsible for movement, learning, emotions, reasoning and memory. There are four lobes

THE FOUR LOBES OF THE BRAIN

The frontal lobe is the lobe of the brain that helps with problem solving, judgment and decision making. This is where our personality is formed. A small part of the frontal lobe helps with speech and controls movement. The frontal lobe is located behind the forehead. The parietal lobes help us understand and interpret information from our senses of taste, temperature, pain and touch. This area also works with handwriting, math skills, language and body position. The parietal lobe is located behind the frontal lobe. The temporal lobes are located in the temple area. This part of the brain helps us understand what we are hearing by processing information for speech and language. The occipital lobes, which are located at the back of your head, deal with vision. The optic nerve carries

OTHER PARTS OF THE BRAIN

The cerebellum is at the base and the back of the brain. It is responsible for coordination, balance and motor functions such as limb and trunk movement, eye movement and speech. The cerebellum also has input into behavioural portions of the brain. The hypothalamus is located deep within the brain and is responsible for hunger, thirst and body temperature. The hypothalamus also drives the pituitary gland to release hormones to keep the

THE BRAIN STEM

• Midbrain: This part of the brainstem is important for some eye movements and houses the wires that control movement as they travel from the brain to the spinal cord. • Pons: This is the largest part of the brainstem and controls some eye and facial movements and sensation. It also has the very important job of relaying information from one part of the brain to other parts.

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that make up the cerebrum: frontal, temporal, parietal and occipital lobes. It is important to note that the movement on one side of the body is controlled by the opposite side of brain. (For example, your right arm and right leg movement is controlled by left side of your brain.)

information to the occipital lobe of the brain where it can make sense of it. The right optic nerve goes to the left occipital lobe and the left optic nerve goes to the right occipital lobe in a criss-cross. There are special doctors at the Stollery called neuro-ophthalmologists or ophthalmologists who can assess the health of the eyes and the optic nerves. If you are scheduled for an appointment, prepare to be there for a while. The detailed examination can be lengthy, so bring extra toys and supplies. A bike helmet should fit properly over the forehead above the brow. It should not be pushed back. Protect your frontal lobe!

endocrine system working correctly. The amygdala is grey matter in the medial temporal lobe and is important for emotional responses. It is part of the limbic system. The hippocampus is important for long-term memory. It is also part of the limbic system like the amygdala and is often targeted when treating seizures surgically. The thalamus is a deep area of the brain that relays both sensory and motor activity.

•M edulla oblongata: This is the part of the brainstem that is closest to the spinal cord and controls breathing, swallowing and heart rate. We don’t have to think about our heart beating or our lungs working because the medulla oblongata controls these involuntary functions.

â&#x20AC;˘ An Overview of the Brain and Spinal Cord â&#x20AC;˘

WHAT ARE CRANIAL NERVES?

Cranial nerves are not like spinal nerves. The main differentiating feature is the houses that send the signals out to the nerves arise from the brain and spinal cord. NERVE

NAME

FUNCTION

Cranial Nerve 1

Olfactory

Smells

Cranial Nerve 2

Optic

Vision

Cranial Nerve 3

Oculomotor

Eye movement

Cranial Nerve 4

Trochlear

Movement of the eyes

Cranial Nerve 5

Trigeminal

Sensation to your face and movement of chewing muscles

Cranial Nerve 6

Abducent

Side-to-side movement of the eyes

Cranial Nerve 7

Facial

Movement of your face, tearing from the lacrimal gland, taste from the front of the tongue

Cranial Nerve 8

Auditory

Hearing and balance

Cranial Nerve 9

Glossopharyngeal

Controls the muscles for swallowing, secretions for parotid gland, sensation to part of the tongue and ear, taste from the back of the tongue

Cranial Nerve 10

Vagus

Controls the muscles in the back of the throat, helps make the abdominal organs work properly, helps regulate breathing, heart rate and blood pressure

Cranial Nerve 11

Accessory

Shoulder movement

Cranial Nerve 12

Hypoglossal

Supplies the muscle of the tongue

Reference: Thelan, L.A., Urden, L.D., Lough, M.E., Stacey, K.M. (1998). Neurologic Anatomy and Physiology. Mosby Inc. Critical Care Nursing: Diagnosis and Management (3rd edition) (pp 742-746).

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• An Overview of the Brain and Spinal Cord •

COVERING OF THE BRAIN

Three layers make up the covering of the brain; innermost is the pia mater, the middle layer is the arachnoid and the outer layer is the dura mater. The toughest layer is the dura mater. Below this layer is a space where subdural collections such as fluid or blood may occur. In the subdural space, children may occasionally accumulate blood, cerebrospinal fluid or an infection. Subdural hematomas (blood) often develop after a

SUBARACHNOID SPACE

traumatic event. Depending on the situation, these bloody collections may be observed or may on occasion need a surgical intervention (burr holes, craniotomy). Subdural hygromas (cerebrospinal fluid) may also occasionally need surgical treatment. Subdural empyemas (infection) often need surgical drainage coupled with antibiotic therapy.

SKULL DURA MATER ARACHNOID PIA MATER

Charles Burke

CEREBRAL CORTEX

1.2 Covering of the brain

VENTRICULAR SYSTEM

If you have ever heard the surgeons talk about “the lakes of the brain” then you have heard about ventricles. Our brain is constantly producing a fluid called CSF, or cerebrospinal fluid. CSF flows around the brain and spine. A certain amount of fluid is reabsorbed by the brain but the remaining CSF will travel through the ventricular system to the fourth ventricle at the base of the brain where it will exit. In neurosurgery, it is not uncommon to see a disruption to the balance between the amount of CSF that is produced and the amount that is reabsorbed. There are many things that can upset this balance, such as blood clots, tumours or scar tissue. This disruption can lead to a backup in the drainage system and lead to increased fluid around the brain resulting in increased pressure. Think about a sink with a slow-flowing tap and the drainage pipe – if the drainage pipe is clogged up, water will either drain out very slowly or not at all. Since the tap continues to run water, the sink will slowly fill up. Unlike the sink that will just overflow, the brain is contained and the fluid has no way to be released. Therefore, pressure in the brain will occur. The Compass

When the ventricular system gets backed up in children, they can develop increased intracranial pressure. Some of the symptoms of increased pressure in the brain are: • In babies: -A bnormal increase in head circumference (size of head) -F ull fontanelle (soft spot on top of baby head is bulging) -S plit sutures (a gap that can be felt between the skull bones) - “ Sunsetting” eyes (downward casting of eyes) -P oor feeding - Irritability • In children: - Headaches -N ausea and vomiting -L ethargy (wanting to sleep all the time and lack of energy) -U ncoordinated walking or lack of balance -V isual changes -P roblems remembering 19

• An Overview of the Brain and Spinal Cord •

GREY AND WHITE MATTER: HOUSES AND TELEPHONE WIRES

GREY MATTER

THORACIC 7

LUMBAR 4

Charles Burke

CERVICAL 5

WHITE MATTER

1.3 Grey and white matter

muscles. The grey matter sends out tendrils like telephone wires to different parts of the central nervous system. • White matter: This represents the telephone wires that are coming from the houses, or grey matter. It is best to think of the white matter as a coil of wires that is transmitting information and signals up and down the central nervous system. The white matter is transmitting signals responsible for movement and feeling, as well as regulating critical functions like temperature, blood pressure and heart-rate signals. These are the functions that happen automatically, without you thinking about them. These signals travel between the body and the brain via the white matter.

Steve Adams

The brain is made up of neurons that act like houses where brain function is developed. You will often hear the term grey matter when describing this part of the brain. The brain is also made up of axons that act like telephone wires and transmit information to and between the neurons. This part of the brain is called white matter. The spinal cord also has grey matter and white matter. Different amounts of grey matter depend on the level of the spinal cord. • Grey matter: This describes the neurons, which are like the houses of the central nervous system. The grey matter is important for directing the senses of the body (speech, hearing, seeing, feeling, memory) and control of the

1.4 Grey and white matter

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• An Overview of the Brain and Spinal Cord •

SPINAL COLUMN

The spinal cord is the main pathway for information connecting the brain and the rest of the body. The human spinal cord is protected by the bony spinal column, which is made up of small bones called vertebrae.

There are 31 vertebrae: eight cervical, 12 thoracic, five lumbar, five sacral and one coccygeal. There are nerves that extend out from each section of the spinal cord. Messages are passed from skin receptors to the spinal cord by these nerves.

SKULL

ANTERIOR (FRONT)

CERVICAL VERTEBRAE BODY THORACIC VERTEBRAE

TRANSVERSE PROCESS

LUMBAR VERTEBRAE

SPINAL CANAL

POSTERIOR (BACK)

Charles Burke

SACRUM

SPINOUS PROCESS

POSTERIOR

1.5 Spinal cord

Spinal nerves are really important because they send special signals with motor, sensory and autonomic information from the body to the spinal cord allowing them to communicate. Motor is movement. Sensory is ➌ SPINAL CORD RECEIVES MESSAGE, INTERPRETS IT AND SENDS MESSAGE FOR A MOTOR RESPONSE – NEED TO MOVE HAND FROM HOT STOVE

SENSORY

MOTOR GREY MATTER 1.6 Spinal nerves

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WHITE MATTER

vision, hearing, touch, taste and smell. Autonomic is the involuntary actions like heart beat and breathing. These things are essential to life but we don’t have to think about each breath we take because it happens automatically. ➋ MESSAGE IS SENT TO SPINAL CORD

➊ SENSORY STIMULI – HAND IS PLACED ON A HOT STOVE

➍ MESSAGE RECEIVED AT MUSCLE FROM SPINAL CORD FOR MOTOR RESPONSE – HAND IS PULLED AWAY

Charles Burke

SPINAL NERVES/SPINAL CORD

Tests and procedures

Steve Adams

We all wish doctors could look at a child and know everything that is going on inside them. Since this is impossible, it is necessary for doctors to order tests, scans and procedures. It may seem like doctors are bombarding you and your child, but the more information the doctor and the team have, the better they are at making an accurate diagnosis and recommending the best treatment. Outside of the family room on 4H2 at the Stollery Children’s Hospital there are many handouts available that explain tests and procedures. These sheets may also be helpful to you. A child life specialist is available within the hospital to help prepare and support children during procedures or any portion of their hospitalization. They establish a trusting relationship with your child and subsequently teach them ways to cope. They offer play programs, teen support, one-on-one interaction, preparation and teaching for surgery or procedures. The specialists can be reached at (780) 407-6818. It’s worth the call.

1.7 External ventricular drain

ANGIOGRAM

BLOOD DRAW

AUDIOGRAM

BLOOD TRANSFUSIONS

An angiogram looks at circulation and the blood supply in the brain and/or spine. The medical team uses x-ray technology and a special dye to get information. Before this procedure they sedate the child.

An audiogram is a hearing test that doctors use to monitor hearing issues. In a soundproof room, children listen for the sounds at varying levels, pressing a button when they hear the sound.

BRAINSTEM AUDITORY EVOKED RESPONSE This tests hearing when children are not able to use standard testing. Technicians place electrodes on the child’s head and earphones on the ears. The test then measures brain wave activity in response to clicks or certain tones. 22

The medical team often orders blood work, which can provide valuable information about your child’s health. In the hospital, a technician or nurse will take blood from your child for testing.

There are many components of blood that can be transfused. Two common transfusions: • Packed red blood cells take three to four hours to complete and are closely monitored for transfusion reaction. When children have had a large blood loss or are anemic from chemotherapy, the physician can order a transfusion. • Platelets are important clotting factors. If a child has low platelets he or she is at a higher risk for bleeding.

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• Tests and Procedures •

COMPUTED TOMOGRAPHY (CT SCAN)

This is a complex computer-enhanced method of taking x-ray pictures of the body. It is less sensitive or detailed than the MRI scans. Neurosurgery prefers to use CT scans to look at blood, bone and catheters. See page 41 for two photos comparing MRI and CT scan. (CTA is a CT scan that focuses on the arteries.)

of a conventional MRI and without putting your child to sleep. For example, in Edmonton, they can use a FISP sequence or fast head MRI (requiring less than 30 seconds) getting a quick look at the ventricular system or fluid for certain children. This quick scan can be used to determine if there is a change in the size of ventricles for children with shunts.

ELECTROENCEPHALOGRAM (EEG)

MAGNETIC RESONANCE ANGIOGRAPHY (MRA)

EXTERNAL VENTRICULAR DRAIN (EVD)

SPINAL TAP

Brain cells talk to each other by creating small electrical impulses. The EEG measures these impulses or the electrical activity of the brain. EEGs are used to monitor for seizure activity.

An external ventricular drain is a tube that is inserted by a neurosurgeon to drain fluid from the ventricles or “lakes” of the brain. An EVD is used to relieve pressure in the brain when the normal flow of fluid is blocked. The EVD attaches to a monitor, which gives a continuous reading of the pressure in the brain. If your child has an EVD in place, they will be monitored in a specialized nursing area in the Intermediate Care Environment (ICE) room or Pediatric Intensive Care Unit (PICU).

MAGNETIC RESONANCE IMAGE (MRI)

This is a scan that uses a magnetic field to look very closely at the area it is scanning. In neurosurgery, MRIs are used to examine brain tissue and fluid in the brain. Many young children may require sedation for this test because it is very important to remain still during the scan. Movement can create an artifact – a smudge or a blur – on the pictures making it difficult or impossible for the doctor to see the details of the brain. A full MRI can take between 30 and 60 minutes. In certain instances, some children will require a dye or contrast given intravenously (in their IV). This dye can help to highlight areas of concern such as brain tumours. New sequences have been developed that may allow a doctor to get quick information without the full detail

This procedure uses both magnetic resonance technology (MRI) and intravenous (IV) contrast dye to visualize blood vessels. Contrast dye causes blood vessels to be visible to the doctor.

This is also known as a lumbar puncture. It is a medical test to assess the cerebrospinal fluid that bathes the brain and spinal cord. A doctor carefully inserts a needle between the bones of the lower spine to collect a sample of this fluid. CSF samples can help provide information on: • signs of possible infection (such as meningitis) • bleeding in the brain • conditions affecting the nervous system

TRANSCUTANEOUS DOPPLER

A transcutaneous doppler is a test used to measure the flow of blood through the brain’s blood vessels. It can be used to help diagnose multiple conditions in the brain that would cause a change in the flow of blood. For example, imagine a blood clot in a blood vessel. The blood clot would cause the flow of blood to be decreased or completely stopped. This test would be valuable in identifying these specifics. In neurosurgery, MRI scans examine brain tissue and fluid in the brain. CT scans look at blood, bone and catheters.

Reference: wikipedia.org/wiki/Brain, reviewed May 25, 2014; brainmadesimple.com, reviewed May 25, 2014. Thelan, L.A., Urden, L.D., Lough, M.E., Stacey, K.M. (1998). Critical Care Nursing: Diagnosis and Management. Mosby Inc., Missouri

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Who’s who on the medical team This section helps you understand who the skilled professionals are that you will meet during your child’s hospitalization and rehabilitation. In the medical world, acronyms are thrown around left, right and centre – this section will let you in on the conversation.

DOCTORS

• Anaesthesiologists play a very important role in your child’s operation. They are the doctors at the head of the bed. They administer medications to put your child to sleep, insert breathing tubes, insert lines, help with pain management and assess the overall condition of your child during the operation. You will meet them before your child’s operation in preadmission clinic and you will see them the day of the operation. • A fellow is a medical doctor who has completed their specialty residency, such as neurosurgery, and is completing a sub-specialty. For example, a neurosurgical fellow is a neurosurgeon and may be completing one or two extra years of training to specialize in pediatrics. • A neurosurgeon is a doctor who specializes in operating on the brain or spinal cord. Their specialty concerns the prevention, diagnosis and treatment of conditions that affect the nervous system (brain, spinal cord and peripheral nerves). • A neurologist specializes in the nervous system and is trained to diagnose and treat medical conditions that impact the brain, spinal cord and peripheral nerves. While a neurosurgeon and neurologist may work together to care for your child, a neurologist and a neurosurgeon are not the same

NURSES

• A charge nurse (CN) is the nurse who is responsible for how a unit functions during a specific shift. Charge nurses are usually more experienced senior nurses. Charge nurses are registered nurses. • A licensed practical nurse (LPN) provides nursing care after completing a two-year diploma. The scope of practice for LPNs has broadened over recent years to include many new skills such as administration of IV and pain medicines. • A nurse practitioner (NP) is an advanced practice registered nurse who has a master’s degree in nursing and clinical experience beyond that required of the registered nurse (RN) role. NPs can diagnose, prescribe and treat various conditions related to their practice. NPs often run follow-up clinics where they will see your child after your child’s surgery. The primary role of the NP is to help you navigate the complicated medical care your child may require.

thing. Neurologists do not operate on your child; a neurosurgeon does. • A neuro-ophthalmologist has the sub-specialty of both neurology and ophthalmology concerning visual problems that are related to the nervous system, such as vision problems caused by a stroke. • A physiatrist is a specialist in movement disorders such as cerebral palsy. If your child requires a physiatrist, they will be seen in the Physical Medicine Clinic at the Glenrose Rehabilitation Hospital. • Radiologists use a variety of scans (MRI, CT scan), x-rays and technology to aid in the diagnosis or treat diseases in the body. Radiologists are the specialty doctors who will interpret the results of these scans. • A resident has received a degree in medicine but is completing hospital training under the supervision of a fully trained doctor. You may hear them refer to residents as a R1, R2 and so on; this number refers to the number of years they have been a resident. The higher the number, the more years they have completed. Different medical specialties have different lengths of training. For example neurosurgical residents have six years of training.

• A nursing attendant (NAT) is a person who provides support services for RNs and LPNs. • A registered nurse (RN) is a nurse who graduated from a nursing program at a college or university and passed a national exam. Nurses practise in hospitals or communities to help achieve good health and prevent disease. Nurses in specialized areas, such as operating rooms or intensive care, require additional training to practice there. • A unit manager is often in the daytime charge nurse role but their duties extend beyond that. The UMs are responsible for the overall running of the unit including scheduling staff and dealing with conflict. If an issue arises during your child’s admission, the UM will help address your concerns.

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• Who’s Who on the Medical Team •

OTHER HEALTH PROFESSIONALS

• Audiologists are practitioners who treat patients with hearing loss. • Occupational therapists (OT) help people of all ages to improve their ability to perform tasks in their daily living and working environments. They also help in development, recovery, or to maintain daily living and employment skills. Examples of this include helping people learn how to feed themselves, grooming skills and help with the development of fine motor skills. • Physical therapists (PT) help with exercises and other physical treatments. PTs will aid in the development of gross motor skills. PTs and OTs often work together. PTs will help your child get up after surgery and ensure they are safe to go home from a mobility perspective. • Respiratory therapists (RT) are breathing specialists. RTs are also advanced practitioners in airway management, establishing and maintaining the airway and monitoring breathing equipment like ventilators. If your child requires a breathing tube after an

SPECIALIZED CLINICS

There are many clinics in the Stollery Children’s Hospital that have focused specialties your child might need. We have included a few that are the most visited by neurosurgical children. In most specialized clinics a referral may be required by a physician or community health nurse. The main hospital switchboard is (780) 407-8822. • Pediatric Emergency Seizure Clinic: This clinic sees children who came to the Emergency Department because of new seizures onset, febrile seizures or first time seizures. • Pediatric Head Shape Clinic: A full assessment of the child’s head shape is done and a treatment plan is created. If required, the child may be referred to other services. Room 1-170, Clinical Sciences Building, Pediatric Surgery Clinic. • Pediatric Neuro-Oncology Monitoring Clinic: This clinic provides specialized cancer care as a child and their family travels through neurosurgery, radiation therapy, chemotherapy and follow-up. • Pediatric Orthopedics Clinics: This clinic is for children who require surgical or medical management for conditions that impact the musculoskeletal system, like bones, joints, muscles and tendons. There are a variety of reasons your child may be referred to this clinic, including fractures, foot and hand deformities, musculoskeletal issues and unstable hips. • Pediatric Neurology Clinics: Pediatric neurology incorporates many different clinics that focus on disorders of the central and peripheral nervous system. The Compass

operation, they will be in the intensive care unit and an RT will be involved to help manage their care. • A social worker is available to provide you with assistance for a wide variety of issues. Some of the services they provide include counselling (emotional and financial), intervention to meet short-term needs, education, linking with community resources and discharge planning. • The unit clerk is at the front desk and does a wide range of specialized secretarial tasks. •S tudents: The Stollery Children’s Hospital is a teaching institution, and there are students of all professions learning from the treatment of your child, to benefit treatment of other children. Feel free to ask people who they are and explain what their job description is if you don’t understand. GOOD TO KNOW: Many people on the medical team wear scrubs.

Clinics that fall under pediatric neurology are: - General Pediatric Neurology Clinic - Comprehensive Epilepsy Clinic - Comprehensive Epilepsy Surgery Follow-up Clinic - Headache Clinic - Neuromuscular Clinic - Pediatric Stroke Clinic - Movement Disorder Clinic - Neuro-Genetic Clinic - Neurometabolic and Demyelinating Clinic - Neurodevelopmental / Neuromotor Clinic •S hunt and Hydrocephalus Clinic: This clinic specializes in assessment, management, education and intervention for children with hydrocephalus and shunts. • Pediatric Neurosurgery Clinic: Located in the Clinical Sciences building, room 1-170, this is where you will see your neurosurgeon or nurse practitioner for diagnosis and follow-up. If your child has a brain tumour, they may also be followed in the neuro-oncology clinic. The clinic does not book the appointments. The physician’s office is the point of contact to reschedule your appointment. Contact: Dr. Vivek Mehta (780)407-8346 Dr. Jeffrey Pugh (780)407-1537 Dr. Keith Aronyk (780)407-6870 Reference: albertahealthservices.ca/services. asp?pid=service&rid=1012102

Common pediatric neurosurgical diagnoses This next section will offer information on some of the more common conditions and diseases that are seen in pediatric neurosurgery. We have tried to include a description of each condition, identify causes, signs and symptoms, diagnostics and treatment options. If the condition your child has been diagnosed with is not in this section, a few reputable sites to investigate it are: neurosurgerykids.com wikipedia.org (available in multiple languages).

ACHONDROPLASIA

Achondroplasia is the most common form of dwarfism. What causes achondroplasia? Achondroplasia is due to a gene mutation in the FGFR3 gene, which causes abnormal cartilage formation. Approximately one in 25,000 babies is born with this condition. In most cases, the parents are of average height and this is a new gene mutation. What are the symptoms of achondroplasia? The following are the most common symptoms of achondroplasia. However, each child may experience symptoms differently. Symptoms may include: • Large head with a prominent forehead, short arms legs, fingers and toes with average size torso • Abnormally small opening at the base of the skull which can lead to breathing problems • Misaligned teeth • Curved lower spine (lordosis, kyphosis) • Bowed legs below the knee • Broad, flat feet • Weak muscle tone and relaxed joints • Normal intelligence How is achondroplasia diagnosed? Achondroplasia can be diagnosed during routine perinatal ultrasound, or shortly after birth on physical examination. Genetics testing confirms diagnosis. Expect x-rays (skeletal survey) and an MRI. 26

26 Achondroplasia 27 Arachnoid cyst 27 Arteriovenous malformations 28 Brain abscess 29 Cerebral aneurysms 30 Brain and spinal tumours 31 Cerebral palsy 33 Chiari malformations 34 Craniosynostosis 37 Epilepsy 39 Hydrocephalus 40 CSF shunts 43 Intracranial hemorrhage 44 Moyamoya disease 45 Spina bifida 46 Syringohydromyelia (Syrinx) 47 Occult spinal dysraphisms (OSD)/tethered cord

Treatment of achondroplasia Most children with achondroplasia will not need neurosurgical intervention. Neurosurgical intervention in children with achondroplasia focuses on the following areas: • Brainstem compression: The opening at the base of the skull where the brain and spine exit, called the foramen magnum, can become compressed. This compression can pinch the brainstem causing breathing difficulties, which can lead to death if not treated. • Hydrocephalus: The flow of cerebral spinal fluid may be a complication in some children, and if required, a shunt may be inserted into the brain to relieve the pressure and drain CSF. • Spinal cord/spinal nerve compression: If the vertebrae do not grow to allow for enough space for nerves to pass in and out, spinal nerves can become compressed, which can lead to numbness, pain or weakness. • Orthopedic surgery: Many children with achondroplasia have lordosis or kyphosis, which is abnormal curvature of spine (hunch back or round back). It may require orthopedic surgery. Reference: hopkinsmedicine.org; Achondroplasia, en.wikipedia.org, reviewed June 2, 2014.

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• Common Pediatric Neurosurgical Diagnoses •

ARACHNOID CYSTS

Arachnoid cysts are sacs that are filled with cerebral spinal fluid that form in the brain or spine; they are not tumours. Arachnoid cysts may grow and some will shrink but most will stay the same size. The majority of arachnoid cysts are found coincidentally on a scan done for another reason and will not become symptomatic or require surgical intervention. What are the symptoms of arachnoid cysts? The symptoms caused by arachnoid cysts depend on the location and size of the cyst. Some of the symptoms can be headaches, nausea/vomiting, lethargy, seizures and vision issues.

ARTERIOVENOUS MALFORMATIONS

Arteriovenous malformations (AVMs) are abnormal connections between the veins and arteries. This tangling of blood vessels can occur anywhere but it is most common in the brain and spine. AVMs vary in size and location in the brain. Most individuals with an AVM do not have any symptoms until the vessels rupture and bleed into the brain. AVMs are often detected when people have a CT or MRI scan for another issue. Symptoms of AVMs may be seizures, headaches, ear noise/buzzing, progressive weakness or numbness. More serious symptoms may require immediate medical attention, such as severe headaches, vision issues, balance issues, speech problems or weakness/ numbness based on the location of the AVM. Complications of AVM • Brain hemorrhage or bleeding in the brain • Reduced oxygen to the brain caused by the altered

AVM

Treatment of arachnoid cysts A neurosurgical team will work with you and assess the best treatment option for your child. Treatment most often is not required. If treatment is required, it may include the following: • A cystoperitoneal shunt is a procedure that drains the cyst and relieves the pressure in the brain. • A cyst fenestration is a procedure where the walls of the cyst are opened up into the normal parts of the brain. Surgery may not be necessary if the neurosurgical team suspects that the symptoms are not actually caused by the cyst. Yearly MRIs monitor for drainage in the cysts.

flow of blood in this tangled area of vessels • Weakness in the blood vessel wall may lead to the formation of aneurysms in the veins that supply blood to the AVM Diagnosing AVM Any patient suspected of having an AVM will undergo a thorough history and physical exam by the medical team. A CT scan or MRI of the brain will often be done to confirm the presence of an AVM. Cerebral angiograms can show the location and features of the AVM. The team threads a catheter into a patient’s artery up to the site through the groin and injects a specialized dye to map out the vessels. Treatment A neurosurgeon will decide how to treat the AVM depending on the location and size of the abnormal blood vessels.

AVM

1.8 Arteriovenous malformations seen on a cerebral angiogram and MRI

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• Common Pediatric Neurosurgical Diagnoses •

If surgery isn’t needed, the doctor may order medications to help manage symptoms. • Surgical removal of the AVM might be in order if it’s small and not deep within brain tissue. The neurosurgeon would remove a part of the skull to gain access to the brain, then use special clips to seal off the AVM and remove it. The surgeon would reattach the skull and close the scalp incision. • Endovascular embolization is a procedure in which the doctor uses advanced x-ray machinery to thread a catheter through the leg artery up to the brain. The doctor places the catheter in one of the arteries that feeds the AVM and he injects a gluelike substance to reduce the blood flow to the AVM. Endovascular embolization occasionally is used as

BRAIN ABSCESS

A brain abscess is a pocket of infection within the brain. The body will often wall off the abscess with a thick membrane (collagen capsule) with the central area containing pus. There may be only a single abscess or multiple abscesses in the brain. Brain abscesses are not very common in children. Typical age at diagnosis is five to 12 years of age. What causes brain abscess? Bacteria are common sources of infection that can cause a brain abscess. Brain abscesses generally occur three ways: spread from a contiguous area of infection (such as sinusitis or mastoiditis), spread from a blood infection, or after an opening in the skull (either from trauma or surgery). BRAIN ABSCESS

a stand-alone treatment but most often is coupled with surgery or stereotactic radiosurgery. • Stereotactic radiosurgery is a procedure that uses focused radiation to scar the area and shrink the AVM. Generally AVMs smaller than three centimetres are suitable for this technology and it takes a minimum of two to three years to know if the treatment has worked. Reference: mayoclinic.org/diseases-conditions/brain-avm/ basics/definition/con-20034230 Reviewed April 2, 2014; Arteriovenous malformation – cerebral ncbi.nlm.nih.gov/pubmedhealth/PMH0001783/, reviewed April 2, 2014.

What are the symptoms of brain abscess? Symptoms are dependent on the location and size of the abscess. The following are the most common symptoms of brain abscess. • Babies: fever, irritability, sleepiness, poor feeding, projectile vomiting, high-pitched crying, bulging and firm soft spot on top of the baby’s head. • Children: fever, poor coordination, lack of appetite, increased sleeping, nausea/vomiting, decreased level of consciousness. The symptoms of a brain abscess may resemble other conditions or medical problems. Therefore, it is important for a thorough assessment by a health care professional and diagnostic imaging. How is a brain abscess diagnosed? Diagnostic tests that may be performed to confirm the diagnosis of brain abscess include: • Blood work • Lumbar puncture or spinal tap to test the cerebral spinal fluid • Magnetic resonance imaging (MRI). Intravenous (IV) contrast agents may be given during the scan to better highlight the abscess • Computed tomography scan (CT or CAT Scan) Treatment of brain abscess Specific treatment for a brain abscess will be determined by your child’s neurosurgeon based upon the location, size, and number of abscesses present. For neurosurgical treatment, drainage of the abscess is often accomplished with needle aspiration or via a craniotomy (skull removal). After drainage of the abscess, the team will try to identify the bacteria responsible for the infection and tailor the antibiotics to fight the infection.

1.9 MRI of brain abscess

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• Common Pediatric Neurosurgical Diagnoses •

CEREBRAL ANEURYSMS

What are aneurysms? Cerebral (brain) aneurysms occur when there is a weakness in the wall of the artery or vein and there is a ballooning out of that section. These ballooned out areas can burst and bleed into and around the brain. What happens if it ruptures? If an aneurysm leaks into the space around the brain it is called a subarachnoid hemorrhage. Symptoms can depend on the amount of blood. Some symptoms that may occur are a sudden severe headache that can last for several hours to days, nausea and vomiting, drowsiness and/or coma. If the bleeding damages the brain, usually from bleeding directly into the brain, it is called a hemorrhagic stroke. This can cause sudden severe headache, nausea, vomiting and paralysis or weakness

of arm or leg, speech disturbances, vision problems or seizures. The damage to the brain tissue and function results from the blood, the increased pressure and swelling that occurs. If you suspect subarachnoid hemorrhage or hemmorhagic stroke, immediate urgent care is required. How are cerebral aneurysms diagnosed? A thorough head-to-toe assessment by the medical team is important in diagnosis. The physician will likely have an emergent MRI or CT scan completed. These scans will give the doctor a better idea of what is going on in your child’s brain. If the CT or MRI scan suggests an aneurysm, then a computed tomography angiogram (CTA) or conventional catheter angiogram may be needed. As pictured, a catheter angiogram offers a roadmap of the vessels of the brain. Treatment of cerebral aneurysms The majority of pediatric aneurysms will require some form of intervention. One method is for a neurosurgeon to place very delicate clips at the base of the aneurysm. Care is taken not to injure or compromise the blood vessels in the area to prevent a stroke from occurring. Another option is endovascular coiling of an aneurysm. With this procedure, radiologists or neurosurgeons put a catheter in the artery feeding it to the abnormal vessel in the brain. From here, various materials such as coils have been used to plug the aneurysm.

ANEURYSM

Reference: What you should know about strokes from strokeassociation.org, reviewed on May 23,2014.

1.10 Angiogram showing an aneurysm of the internal carotid artery

BLOOD VESSELS

BRAIN

Steve Adams

CEREBRAL ANEURYSM 1.11 Aneurysms

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• Common Pediatric Neurosurgical Diagnoses •

BRAIN AND SPINAL TUMOURS

Brain tumours are one of the most common types of childhood cancers. A diagnosis of a brain tumour can send shock and fear through both the patient and the family members. Brain tumours in children are not all alike, and as their makeup varies, so does the treatment and outcome. With all of the variations in ways to diagnose and treat brain tumours, we have elected to offer a small insight in this section. If your child is diagnosed with a brain tumour, it is important you understand the name and type of tumour. At the Stollery Children’s Hospital you will be given a book called Childhood Brain & Spinal Cord Tumours: A Guide for Families, Friends and Caregivers, which the Kids with Cancer Society generously donated. This book is a wealth of knowledge and will have more information specific to your child’s diagnosis. If you haven’t received the book yet, make sure you ask someone on your child’s medical team for a copy. Brain tumours in children can be divided into two categories: malignant and benign. Malignant generally means that the tumour will become progressively worse and is capable of invading the adjacent brain tissue. Malignant tumours are often considered cancerous tumours. Benign tumours are generally slow growing and do not often spread to other areas of the brain. The problem with benign tumours in the brain is that while they are slow-growing or not aggressive, they also don’t respond as well to other therapies or treatments such as chemotherapy or radiation therapy. This is important when the tumour grows in an area of the brain like the brain stem which is a very difficult area to operate in. Gliomas While there are other types of brain tumours in children, the most common types are gliomas and medulloblastomas. Gliomas originate from the glial cells in the brain. The glial cells are the supportive cells in the brain and have responsibilities such as myelination (insulating covering of axons from a cell called a neuron). Common types of glial tumours are: • Astrocytomas • Ependymomas • Oligodendrogliomas Glial tumours can be either low grade (benign) or higher grade (malignant). Treatment of low-grade glial tumours may involve a single therapy such as surgery. Occasionally even benign glial tumours will be treated with radiation or chemotherapy. Malignant glial tumours will often have all types of treatment and often cannot be cured. Medulloblastoma A medulloblastoma is malignant tumour that occurs in the cerebellum or the back of the brain. Medulloblastomas can be fast-growing tumours and, 30

1.12 MRI of brain tumour

unlike many other types of brain tumours in children, can be passed on through the CSF and result in the tumour spreading down the spine (metastasizing). As a result, medulloblastomas require surgery followed closely by chemotherapy, radiation therapy or both. You may also hear a medulloblastomas be referred to as a PNET, or a primitive neuroectodermal tumour. Both terms refer to the same type of tumour. Like brain tumours, spinal cord tumours can vary in type, be benign or malignant and can be found in different areas of the spinal cord. Common types of spinal cord tumours in children are ependymomas and astrocytomas. What causes brain or spinal tumours? Often the first question parents ask is, what caused this tumour? Was it something I did or didn’t do? The answer to the second question is a resounding no. Your child’s brain tumour is an unfortunate and awful occurrence, in no way your fault. The answer to the first question is not so simple. Truthfully, it is largely unknown. A tumour forms when normal healthy cells start to multiply and grow abnormally at a faster rate. What causes these cells to turn on and begin this process is not well understood. Research aims to explore both genetic and possible environmental reasons for this accelerated process. There are some well-known genetic conditions, such as neurofibromatosis or von Hippel-Lindau. Individuals with these conditions have a higher rate of developing a brain tumour than the average person, but for most patients, the cause will never be exactly known. The Compass

• Common Pediatric Neurosurgical Diagnoses •

How is a brain tumour diagnosed? Most brain and spinal tumours are diagnosed with a CT scan or an MRI. Often doctors order a CT scan when the child presents to the emergency room. A CT scan is an easier type of brain scan to arrange and most often doesn’t need sedation. When a brain tumour is suspected or found, an MRI will most likely follow. This MRI will require the child to lie perfectly still, so depending on the age and maturity of the child, sedation may be required. For most tumours a dye will be injected into your child’s intravenous (IV) part way through the MRI to enhance or highlight certain features of the tumour and guide us in deciding what type of tumour it is and the next steps in treatment. Most children will also require some blood work at the same time to check how healthy they are and to prepare them for treatment such as surgery. When we suspect certain types of tumours, we may order very specific blood work such as alpha-fetoprotein (AFP) or beta human chorionic gonadotropin (beta-H_ C_ G_). These “markers” or indicators can help us identify what type of tumour you child has. How are brain tumours treated? The treatment for brain and spinal tumours varies greatly depending on the type and location of tumour.

CEREBRAL PALSY

What causes cerebral palsy (CP)? CP results from abnormal development or damage to part of the brain that controls motor function. It causes abnormalities in posture, muscle tone and movement. CP impacts children differently, ranging from mild to severe. Although most cases of CP are of unknown cause, certain risk factors have been identified. They include prematurity, bleeding in the brain, trauma, infection, complication during labour and delivery, and drug/ alcohol abuse during pregnancy. What are the symptoms of cerebral palsy? Although each child may experience symptoms differently, there are some common representations. As babies grow older they will often begin to show delays in meeting developmental milestones or have poor motor control. Over time, and as children grow, the muscles may become stiff, especially in the arms and legs. This is called spasticity. Please read the section on spasticity for more information. Children with CP may also have additional health conditions such as seizures, strabismus (when eyes point in different directions), respiratory issues, bladder/bowel problems, bone abnormalities, hearing or speech issues and learning disabilities. The Compass

In some cases, blood work will tell us what type of tumour your child has and no brain surgery is necessary. Your child will be transferred to the oncology (cancer) program and chemotherapy or radiation will be the main treatment. In other cases doctors may opt to get a biopsy (a tiny sample) of the tumour. A biopsy is when doctors make a small hole in your child’s scalp and skull and go in with an instrument to take a small piece of the tumour to examine and make a diagnosis. Depending on the results of the biopsy and what type of tumour your child has, they may require a more extensive surgery or may not require any additional surgery, but they will require some other therapy such as chemotherapy or radiation therapy. And in other cases you child may require a much larger surgery in order for the pediatric neurosurgeon to be able to try to remove as much of the tumour as possible. The team will discuss the exact plan for you and your child. Reference: Shiminski-Maher, T., Cullen, P., & Sansalone, M. (2002) Childhood Brain & Spinal Cord Tumours; A Guide for Families, Friends and Caregivers. O’Riely & Associates, California.

How is cerebral palsy diagnosed? The medical team makes a diagnosis of CP with a complete and thorough physical. Although symptoms may appear early, diagnosis is typically made at one to two years old. Doctors may use diagnostic tests such as an MRI of the brain, an x-ray of the spine or body, EEG, blood tests and gait analysis to help with diagnosis. Gait analysis is a specialized test of how the child walks. Important terms for CP diagnosis • Diplegia: either both arms or both legs affected • Hemiplegia: limbs on only one side of the body affected • Quadriplegia: all four limbs are impacted • Monoplegia: one limb is affected • Triplegia: three limbs impacted Types of cerebral palsy • Spastic cerebral palsy is the most common type of cerebral palsy. It causes the muscles to be stiff and tight. • Athetoid (or dyskinetic) cerebral palsy is characterized by uncontrollable movements. • Athetosis is characterized by slow, uncontrollable movements of the hands, feet, arms, or legs. • Chorea causes abrupt, irregular, jerky movements. 31

• Common Pediatric Neurosurgical Diagnoses •

• Choreoathetosis is a combination of the two above conditions. • Dystonia causes slow rhythmic movements with muscle tone and postures abnormalities. • Ataxic cerebral palsy affects balance and depth perception. Persons with ataxic CP have poor coordination and walk unsteadily. • Mixed cerebral palsy means the child has symptoms of two or more types of cerebral palsy. Treatment of cerebral palsy There is no cure for CP and goals of treatment are to minimize the complications and manage the symptoms. A multidisciplinary health care team is involved to care for children with CP. The Physical Medicine Clinic at The Glenrose Rehabilitation Hospital has specialized doctors called physiatrists who monitor children with CP closely and provide medical intervention, such as botox treatment. Surgical and non-surgical interventions are managed based on child’s specific needs. Neurosurgical operative interventions for spasticity in cerebral palsy patients After the medical treatment for spasticity in children has been exhausted, neurosurgeons may be asked to get involved in the management of your child’s increased tone. ➊ Baclofen pump: When a higher dose of baclofen is required and the results cannot be achieved with oral medications, the team may consider using intrathecal baclofen. This means the drug is inserted into the spinal fluid around the spinal cord so that the drug can work directly on the spinal cord. A baclofen pump requires surgical placement of a hockey-puck-shaped pump into the belly. A line is threaded around the side into the spine. The pump allows for continuous delivery of baclofen. Doctors use an external programmer to change dosage. A baclofen pump requires refilling approximately two to four times per year using a simple needle insertion into the pump under sterile conditions. Baclofen pumps

are an option for children who require a high dosage of oral baclofen and have side effects. Administering via a baclofen pump allows for a significantly lower dose, subsequently less symptoms while still having the positive effects of decreasing spasticity. ➋ Selective dorsal rhizotomy: This is a procedure done for children with spastic diplegia who have failed maximum medical management for tone. Usually the procedure happens at the age of seven or eight and involves sectioning some of the sensory nerve roots that are important for the development of spasticity. It involves an operation in the lower spine so that the nerves can be accessed and selectively cut. If your child has been diagnosed with CP, contact CP Alberta and CP Edmonton for assistance and guidance. Take a moment to review the resource section in this book and find out what is available in the community for support. Reference: kidshealth.org/parent/medical/brain/cerebral_ palsy.html; Disease and conditions, cerebral palsy from mayoclinic.org, reviewed on May 6, 2014.

Community Health nurses will offer you information on age-appropriate milestones during your immunization appointments. Look at myhealth.alberta.ca for information on developmental stages for ages zero to six years.

GOOD TO KNOW: Find out more about education, therapies and research for children with neurological conditions at threetobe.org.

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• Common Pediatric Neurosurgical Diagnoses •

CHIARI MALFORMATIONS

A Chiari malformation is a neuroanatomical condition that involves the area of the brain closest to the spinal cord. This part of the brain (the cerebellar tonsils, which are not the tonsils in the throat) descends into the neck area. The cerebellar tonsils normally reside within the cranial cavity. In children if the tonsils are more than five millimetres into the spinal canal then a radiologist may report that your child has a Chiari malformation. It is important to remember that the doctors will also look at the base of the skull to see if the base of the skull looks tight and if the bones are developed correctly. When the cerebellar tonsils descend too low into the cervical spinal canal the physician will often make sure that there are no abnormalities in the brain that are pushing the tonsils down or any abnormalities in the spinal canal pulling the tonsils down. Different types of Chiari malformations Different malformations are numbered from one to four. The variations in terminology depend on if the tonsils are the only part of the brain to move into the cervical spinal canal. In some of the other subtypes other parts of the cerebellum (vermis), fourth ventricle, or brainstem migrate into a lower position. Excess water can collect within the spinal cord, or the bones at the craniocervical junction can be abnormal, resulting in a complex Chiari malformation. • Type I: This is the most common type of Chiari malformation. Most of the patients are asymptomatic and the diagnosis is made based on MRI imaging. • Type II: Type II involves the cerebellar tonsils, the brainstem, and part of the 4th ventricle that will descend into the spine. This type of Chiari is associated with children with spina bifida from birth and occasionally needs treatment.

CHIARI TYPE I

What are the symptoms of Chiari malformation? Most Chiari malformations are asymptomatic. To find out if the Chiari malformation is symptomatic in your child, the physician will ask specific questions and examine for certain abnormalities. • Chiari 1 symptoms - Brainstem: children may have trouble with breathing or swallowing - Cerebellum: children may have problems with balance and normal movement of the eyes - Spinal cord: children may have trouble with weakness, numbness or pain in the arms or legs - Headaches: children may have trouble with occipital headaches that are precipitated by coughing, sneezing or physical activity - Scoliosis: children with scoliosis can sometimes have a Chiari malformation with an associated excess cerebrospinal fluid within the spinal cord, called syringomyelia Surgical treatment If your child needs surgery for his/her Chiari malformation, surgical techniques vary. If there is no problem with the top compartment of the brain or the spinal system, then the neurosurgeon will focus on the base of the skull and top of the spine. The principle of the surgery is to decompress the cranio-cervical junction to take any pressure off the back of the brain and allow normal cerebrospinal fluid dynamics to take place. Reference: Donald M Hadley J Neurol Neurosurg Psychiatry 2002; “Chiari Malformation Fact Sheet,” NINDS. Publication date March 2013. NIH Publication No. 13-4839.

CHIARI TYPE II

1.13 MRI of a Chiari type I and type II

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• Common Pediatric Neurosurgical Diagnoses •

CRANIOSYNOSTOSIS

An infant’s skull is made up of lots of interlocking bones that will join later, allowing for brain growth. Craniosynostosis (CS) is a premature fusion of one or more of these joining points, called cranial sutures. It causes a deformation of the skull. The incidence of CS is difficult to quantify since some milder forms are not reported, but our best estimates are roughly one baby in 2,100 is born with it. With CS, the head and brain growth can be restricted depending on the number and location of the suture fusion. CS requires surgery to be corrected and often a remolding helmet is added depending on the age of the child. Premature fusion of one or more of these sutures causes abnormal growth patterns perpendicular to the suture, resulting in changes to the infant head shape and at times the face of the infant. What causes craniosynostosis? Craniosynostosis may be caused by genetic factors. Most cases of craniosynostosis are not related to a genetic abnormality. Certain suture fusions are more

CORONAL SUTURE

FRONT

METOPIC SUTURE

SAGITTAL SUTURE

likely to have a genetic cause than others and thought to have a genetic link as they tend to be found in more than one family member. For some instances of craniosynostosis a single-gene mutation is likely to be the cause. These gene mutations cause early fusing of the normal sutures of the skull. Syndromic or multiple suture synostosis is often caused by multiple gene mutations which may include FGFR 1, FGFR 2, FGFR 3 and the TWIST genes. Mutation of these genes can lead to the more severe forms of craniosynostosis such as Crouzons, Apert and Peiffer syndromes. How is craniosynotosis diagnosed? Most often, craniosynostosis is diagnosed by a thorough physical exam. This helps to distinguish a craniosynostosis from a positional head shape abnormality such as positional plagiocephaly or brachycephaly. There are tell-tale signs that help clinicians determine the type of craniosynostosis: • Sagittal synostosis: This is a premature fusion of IPSILATERAL FRONTAL FLATTENING

FRONT

FUSED SUTURE

1.14 Normal sutures

THE PATIENT HAS A LONG, NARROW HEAD

BACK

LAMBDOID SUTURE

BACK 1.15 Unilateral coronal synostosis

FRONT

THE PATIENT HAS A TRIANGLESHAPED FOREHEAD

FRONT FUSED METOPIC SUTURE

1.16 Saggital synostosis

BACK

Charles Burke

FUSED SUTURE

BACK 1.17 Metopic synostosis

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• Common Pediatric Neurosurgical Diagnoses •

the sagittal suture. Fusion of this suture does not allow for the expansion of the skull width-wise and so the babies develop long narrow heads. Sometimes the infants will develop what is known as “frontal bossing” or a forehead that seems to stick out more than that of the average baby. In these babies the back part of the head will tend to be narrower than the forehead, which is not the case in a normal infant skull where the back part of the head is the widest part of the skull. •C oronal synostosis (unilateral or bilateral): Coronal synostosis can be the fusion of one of the coronal sutures (unilateral) or fusion of both sutures (bilateral). Unilateral coronal synostosis will cause one eye to look significantly wider than the other and will cause the nose to tip to one side. Bilateral coronal synostosis (both sides) will give the appearance of a very tall forehead and two wide eyes and is more likely to be associated with an underlying genetic abnormality. •M etopic synostosis: Metopic synostosis is a premature fusion of the suture line that runs down the middle of the forehead. It gives the appearance of a triangular forehead and the eyes are close together. Because the metopic suture normally fuses at a young age, this type of synostosis is generally not progressive and the look of the forehead and face will usually not get worse over time. • Lambdoid synostosis: Lambdoid synostosis is very rare and is often confused with a positional plagiocephaly. Lambdoid synostosis causes a flat back of the head on the same side as the fused suture. The ear on the fused side tends to be located more downwards and backwards than the other ear. Plain x-rays are generally not helpful in the diagnosis of craniosynostosis. If the health care professional is unsure of the diagnosis, a 3-D CT scan of the skull may help. A 3-D CT is done in a regular CT scanner but takes

1.18 Regular CT showing bone

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many more pictures of the skull. The baby or child is required to lay still, so depending on the age of the child, sedation may or may not be necessary. Computer software is then used to create a 3-D model of the skull, which is useful for both diagnosis and surgical planning. In some cases, mostly with multiple suture synostosis, the neurosurgeon may order an MRI of the brain to check the overall health of the brain and to make sure there is not underlying hydrocephalus before any operations are performed. How is craniosynostosis treated? There are several ways to approach the correction of craniosynostosis. Options for surgery depend on the age and diagnosis of your child. Different centres may offer different treatment options. At the Stollery Children’s Hospital we generally have three different types of surgical repairs: ➊ Endoscopic surgical repair: This surgery is most commonly available to babies under three to four months of age that have a sagittal synostosis. While there may be options to perform endoscopic surgery on a different fused suture, such as a lambdoid or a unilateral coronal, the infant age is not optional. In order to be able to perform this surgery endoscopically the bone of the infant’s skull must be thin enough to use scissors to cut it. After four months of age the child’s skull changes, making the technique less effective. If your baby is a candidate for an endoscopic repair, they will have two three-centimetre incisions on the scalp, one just behind the soft spot or fontanel and a second incision near the back of their skull. Using an endoscope, the scalp is carefully lifted off the skull so as to not tear any major veins. Surgical scissors are then used to cut out at the fused suture, which is approximately the width of your thumb and about eight to 10 centimetres long. Cuts may also be made under the skin down the sides of the skull to allow for more rapid growth width wise. The surgery takes about two to three hours to complete. Babies often spend their first night after the operation in the ICE room (intermediate care environment) or step-down PICU (pediatric intrusive care unit) and are in hospital for two days. At this age the bone that is removed will grow back in, much like the soft spot of a baby closes as the baby gets older. Once the skin incisions have healed, approximately two weeks after the surgery, the baby will be fitted for a remolding helmet. This helmet will continue to round out the skull, and works by gradual pressure, much like a retainer does on a child’s mouth. The helmet is worn 23 hours a day, seven days a week, for four to six months. The helmet must be modified here at the 35

• Common Pediatric Neurosurgical Diagnoses •

Stollery Children’s Hospital every week for the first months, and then approximately every two weeks after that. Occasionally a second helmet may need to be made if the head growth or skull shape change is rapid and the baby outgrows the current helmet. There are no out-of-pocket costs associated with the surgery or helmets for babies who have craniosynostosis. ➋ Minimal open surgical repair: This surgery is similar to the endoscopic surgical repair, but will often have wider incisions as either the forehead, the back of the head or both are more severe and require more surgical repair. This still requires the infant to be under about eight months of age and to have only one fused suture. The surgery takes about two to three hours to complete, babies often spend their first night after the operation in the ICE room or step-down PICU and are in hospital for two to four days. Most babies will require a remolding helmet after the surgery. ➌ Total cranial vault repair: This surgery is often performed on infants who are diagnosed older or have multiple suture fusions. A total

cranial vault involves an ear-to-ear incision and will most likely require some dissolvable plates and screws to be used to secure the bone cuts in place. The surgery varies from case to case. Occasionally the neurosurgeons will ask a pediatric plastic surgeon to help with shaping the skull. This surgery takes six to eight hours, and infants may spend a night in the Pediatric Intensive Care before being transferred to the ICE room or stepdown PICU. Generally, babies are in hospital for about a week and usually they do not require a remolding helmet. Reference: Hummel, P., & Fortado, D. (2005a). “Impacting Infant Head Shapes. Advances in Neonatal Care,” 5(6), 329-340. Lajeunie, E., Le Merrer, M., Bonaiti-Pellie, C., Marchac, D., & Renier, D. (1995). Genetic study of nonsyndromic coronal craniosynostosis. American Journal of Medical Genetics, 55(4), 500-504.

FUSED SUTURE

FRONT

BACK 1.21 Endoscopic sagittal synostosis repair – incisions

1.20 3D CT scan showing fused sagittal suture

OUTLINE OF BONE REMOVAL

FRONT

Charles Burke

1.19 3D CT scan showing fused LT coronal suture

BACK 1.22 Endoscopic sagittal synostosis repair – removal

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• Common Pediatric Neurosurgical Diagnoses •

EPILEPSY

Epilepsy is a condition that affects people of all ages, although younger children are more likely to have seizures than adults. Epilepsy occurs when there is abnormal electrical activity in the brain. Young children can have seizures if they have a high fever. This is called a febrile seizure and doesn’t mean a child has epilepsy. What causes epilepsy? In many cases there is no specific cause of epilepsy. A few known causes of epilepsy include genetics, minor brain injury or brain infection such as meningitis or encephalitis that produce scarring on the brain, abnormal development of the brain that may or may not be seen on MRIs, or brain tumours. What are the symptoms of epilepsy? Seizures can cause a wide variety of symptoms such as: • Strange sensation on one side of the body • Changes in behaviour or emotions • Muscle spasms • Convulsions • Sudden loss of awareness or consciousness There may be certain factors that contribute to seizures. Poor nutrition, missed medication, flickering lights, skipping meals, iIlness, fever, allergies, and lack of sleep are a few common triggers. Many people learn what their triggers are and strive to avoid them to prevent a seizure from occurring. How is epilepsy diagnosed? There are a variety of tests used to diagnose epilepsy. Electrical recordings of the activity of the brain called electroencephalograms (EEG), video-EEG telemetry, computed tomography (CT), magnetic resonance imaging (MRI), and positron emission tomography (PET) can help doctors assess and visualize abnormalities. • The above tests are described in tests/procedure section. • A video-EEG is a test where a video camera is running simultaneously during an EEG, offering neurologists the ability to assess all aspects of the seizure. Here are some terms that you may hear from your doctor with the diagnosis: • Idiopathic means there is no apparent cause. • Cryptogenic means there is a likely cause, but it has not been identified. • Symptomatic means that a cause is known. • Generalized means that the seizures are involving the whole brain at once. • Focal or partial means that the seizure starts from one area of the brain. The Compass

Types of epilepsy The two types of epilepsy are generalized and partial (focal). The seizures associated with generalized epilepsy (whole brain involved) are: • Grand mal seizures: Patients lose consciousness and have muscle stiffness and convulsions. You will often hear this referred to as “tonic-clonic.” Tonic is referring to the stiffness and clonic is referring to the jerking motion. • Petit mal or absent seizure: This type of seizure can occur multiple times in a day. There is a change in consciousness and patients may stare in a strange way. • Clonic seizures: Patients experience jerking movement with no change in consciousness • Tonic seizures: Muscles are stiff • Atonic seizures: Muscles become weak The types of seizure for partial (focal) epilepsy are: • Simple: When people have simple partial seizures, they are fully awake, alert and able to interact during the seizure. These seizures are short in duration. • Complex: During these seizures people can appear like they are day-dreaming and staring blankly. Some people will begin fidgetting or doing a repetitive movement such as picking at clothes or smacking their lips. Managing seizures: Some children have seizures that are controlled with medications while other children have seizures that are difficult to control, despite treatment. The type of epilepsy that is difficult to control is called medically intractable epilepsy. Uncontrolled epilepsy places the child at risk for physical injury during seizure/falls, adverse reaction to medications, learning impairments and disruption to daily life. The first treatment option for epilepsy is always medication. There are many different types of medications that may be used depending on the type of epilepsy and frequency of seizures. If one medication is not successful in controlling the number and severity of seizures others may be added. If a child is on multiple medications and continues to have debilitating seizures, a workup for brain surgery may be an option for your child. This workup will usually include continuous telemetry to try to determine the area of the brain that is causing the seizures. Patients may also require depth electrodes, a surgical procedure where, while your child is asleep, very thin electrodes are inserted into the brain to further identify the area where the seizures are starting. The electrodes are connected to a monitor for several days and continuous reading of the electrical impulses 37

• Common Pediatric Neurosurgical Diagnoses •

of the brain are recorded and analysed by your medical team to map the area of the brain that may need to be resected or removed. If an area of the brain is identified to be the primary spot of origin of the seizures then surgery may be an option. It is important to remember that most children with epilepsy will have good control of their seizures with medications. There are even certain types of seizures that children may outgrow with time. Symptomatic seizures due to an area of scarring in the brain, abnormal brain development, or tumour are often more difficult to treat with medications alone. These are the ones where more investigations are necessary to determine if surgery can help stop or control the seizures. When a specific area of the brain is identified to cause seizures and we can see an abnormality on MRI, an operation to remove that abnormal area of brain can get rid of most seizures, and many children can even stop taking medications if they have had no seizures for a year. Specific types of surgery include: • Temporal lobectomy: Part of the temporal lobe of the brain (an area of the brain behind the eyes and just above and in front of the ears) can be scarred from early brain injuries or infections. This area of the brain is often the cause of symptomatic seizures. Removal of the scarred area of the temporal lobe is the most common operation done to control or eliminate seizures. This area of the brain is involved in memory. Temporal lobectomy needs testing by a neuropsychologist to determine how much risk there might be to memory after surgery. The type of memory loss can sometimes lead to difficulties in school, or may have minor impact on memory. It does not cause your child to forget who you are. • Focal resection: When seizures are coming from an area of the brain that didn’t form properly, seizures

are often difficult to control with medications. Removal of this part of the brain can be very successful in controlling seizures, depending on the size of the abnormal area. The normal functions of the brain have often moved away from this area and are not affected by surgery. • Tumour resection: When seizures are caused by a brain tumour, removing the tumour can often stop the seizures. • Corpus callosotomy: Children who have generalized seizures that are not coming from one part of the brain can sometimes have something called drop attacks. This is where the body loses all muscle control without any warning and children fall and can often have broken bones or other injuries. Sometimes the surgeons will cut the connection between the two sides of the brain (the corpus callosum) to stop the rapid spread of the seizure and prevent drop attacks. For these children, they will continue to have seizures and require medication, but hopefully the drop attacks stop and the children are at less risk of serious injury. • Hemispherectomy: Children who have seizures coming from a large area of the brain, may have dozens of seizures every day that cannot be stopped with medications. For these children, we may consider a very aggressive operation to disconnect the side of the brain causing seizures. This operation causes weakness on the opposite side of the body, but children are still able to walk and even run with a limp. Reference: Epilepsy Health Center, webmd.com/epilepsy/ guide/types-of-seizures-their-symptoms, reviewed January 23, 2014.

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• Common Pediatric Neurosurgical Diagnoses •

HYDROCEPHALUS

Hydrocephalus is one of the most frequently seen problems in a pediatric neurosurgical department. Hydrocephalus is frequently referred to as “water on the brain” but it is actually more like a build-up of cerebral spinal fluid inside the brain. Our brain is constantly producing a fluid called CSF or cerebrospinal fluid. CSF flows around the brain and spine. A certain amount of fluid is reabsorbed by the brain but the remaining CSF will travel through the ventricle to the fourth ventricle at the base of the brain where it will exit. Hydrocephalus happens when something has occurred to prevent the flow of the CSF. When this occurs, there is a build-up of spinal fluid in the brain, which can lead to injury or even death if not treated. What causes hydrocephalus? Hydrocephalus usually results either from: • An imbalance between CSF production and absorption (communicating hydrocephalus). This is often seen with meningitis and subarachnoid hemorrhages • A blockage within the ventricular system, such as a tumour, that prevents CSF from circulating (obstructive hydrocephalus) While many cases have no clear cause, the following have been associated with the development of hydrocephalus: bleeding, infection, trauma, tumours, vascular problems and structural problems. What are the symptoms of hydrocephalus? Hydrocephalus is commonly diagnosed in utero by ultrasound or fetal MRI. For babies, pediatricians or public health nurses may identify a rapidly enlarging head circumference or full fontanelle (soft spot), the infant may or may not have symptoms such as vomiting, failure to thrive, irritability and delay in meeting developmental milestones. Older children with hydrocephalus will most likely be associated with a trauma or brain tumour. Symptoms include severe headache, nausea, vomiting and decreased level of consciousness.

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How is hydrocephalus diagnosed? Either a CT scan or MRI scan can be used to diagnose hydrocephalus. Neurosurgeons may choose to order an MRI scan because this scan offers more detailed pictures which may help identify the possible cause of the hydrocephalus. View CSF shunt section (page 41) to see what hydrocephalus looks like on an MRI, CT and FISP scan. Treatment of hydrocephalus If progressive hydrocephalus is diagnosed, almost all cases require surgery. If there is a mass in the brain, such as a tumour or cyst that is disrupting the flow, it is sometimes possible to remove the mass and allow for normal flow of the CSF. If the blockage cannot be removed, a shunt may need to be inserted to help move the fluid out of the ventricle to other sites of the body, such as the abdomen, chest or heart. The most common operation is a ventriculoperitoneal shunt. Another common operation used in many pediatric neurosurgical centres is an endoscopic third ventriculostomy (ETV). An ETV is a hole that is created in the floor of the third ventricle, like creating a new drain in the bottom of a plugged sink. This procedure is most successful in older children with non-communicating hydrocephalus. The advantage of this procedure is it may avoid the implantation of a foreign body. Like a shunt, however, there is also a chance that the ETV can seal over and the hydrocephalic patient may become symptomatic again. FAMILY EXPERIENCE: “I remember sitting in the community health clinic and the nurse being worried as she looked at my son’s head measurement and plotted it on the head growth chart. His head size was going up so quickly. I knew something was wrong.”

• Common Pediatric Neurosurgical Diagnoses •

A shunt is a tube, placed in by a neurosurgeon, that allows the fluid to flow through it. A valve regulates the flow of the fluid. Most shunts are used to divert cerebrospinal fluid from one location to another. Mostly, shunts have three pieces: a proximal catheter, a valve mechanism (the bump under the skin on the head that may be located at the top or back of the head) and a distal catheter. The neurosurgeons at the Stollery are very experienced with shunts. It is important to avoid constipation with shunts, as it increases the pressure in the abdomen, making it difficult to drain CSF from the brain. Shunt types • Cerebral shunt: Some children have increased fluid around their brain or conditions that cause increased intracranial pressure. In these children, a one-way valve is used to drain excess fluid from the brain and carry it to other parts of the body. A oneway valve means the fluid can only travel one way: out of the brain. This valve sits outside the skull, but beneath the skin. • Lumbar-peritoneal shunt: This is a tube or shunt with a one-way valve that is used to drain the spinal cerebrospinal fluid and transports it to the abdomen. This shunt is usually inserted in the lower back (lumbar area). It then runs beneath the skin to the abdomen, and eventually to the abdomen (belly) where it gets absorbed. Shunt Type • Ventriculo-peritoneal (VP) shunt: Inserted into the ventricle of the brain and drains into the peritoneal cavity (abdomen) • Ventriculo-atrial (VA) shunt: Inserted into the ventricle of the brain and drains into the right atrium of the heart • Ventriculo-pleural (VPL) shunt: Inserted into the ventricle of the brain and drains into the pleural space (chest) • Lumbar-peritoneal (LP) shunt: Inserted in lower back (lumbar) spinal subarachnoid space and drains into the peritoneal cavity

DATE OF SURGERY/CHANGE

VALVE

1.23 Shunt

Charles Burke

CSF SHUNTS

1.24 Shunt types

GOOD TO KNOW: If the shunt is placed in the lumbar area of the spine, the bump from the valve will be on the back next to the spine. TIP: A simple way to prevent shunt infections is to cut your child’s fingernails! Children will often scratch at their shunts and, if the scratch is deep enough, their shunt can get infected.

TYPE OF SHUNT

SHUNT SETTING

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• Common Pediatric Neurosurgical Diagnoses •

If your child has a programmable shunt, a neurosurgeon may need to reprogram it after the MRI is complete. An MRI machine uses a magnetic field, which may change the setting of your child’s shunt. New programmable valves are being developed so that reprogramming is not necessary after an MRI scan. Children with programmable shunts should stay away from strong magnets. Toys like Thomas the Train have very weak magnets and are okay, but there are many strong magnetic devices on the market to avoid. Tests and scans used for shunts • Shunt series: These are x-rays used to examine the tubing. They help identify if there is a disconnection or a breakage. • MRI scans: There are two types of MRI scans. First, there is a fast head MRI (FISP), which takes about 30 seconds, and your child will be awake. Parents can accompany child if required. This scan is used to determine if there is a change in the size of the ventricles. Second, a full MRI is a more detailed MRI that can take 30-60 minutes and examines the CSF flow as well as the brain itself. Sedation is frequently required for small children.

What are they looking at? Here is the picture of a normal brain MRI. In the middle of the brain you’ll see a darkened thin shape that resembles bat wings. This is the ventricle system of the brain. Now, look at the views below that show hydrocephalus on a CT, MRI and fast head MRI (FISP scan or fast head). In hydrocephalus, you can see how the ventricles (bat wings) are much bigger than in a normal brain, and now resemble a butterfly.

1.26 Hydrocephalus on a CT

GOOD TO KNOW: Neither kind of MRI has radiation. • CT scan: a quick scan, useful in looking at the tubing of the shunt in the brain as well as in identifying any bleeding or blood in the ventricle.

1.27 Hydrocephalus on a MRI

1.25 Normal brain MRI

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1.28 Hydrocephalus on a FISP sequence

• Common Pediatric Neurosurgical Diagnoses •

Doctors will compare older and new CT or MRI films to assess if the ventricles are remaining stable in size or if they have changed. This information, along with your child’s symptoms, allows the neurosurgical team to know if there is a problem with the functioning of the shunt. Shunt tap Most shunt valves have a small dome or bulb reservoir (this is the bump you see under the skin) designed to sample CSF by inserting a small needle under sterile procedure by a neurosurgeon or NP. This procedure is done to relieve pressure in urgent situations or to test for infection. The Stollery’s neurosurgery team identified some signs and symptoms of shunt malfunction or infection to watch for: • Signs and symptoms for infants - Enlargement of baby’s head - The soft spot at top of head is full and bulging - Prominent scalp veins - Swelling around shunt - Vomiting - Irritability - Sleepiness - Not eating or drinking - Redness along shunt tract - Downward gazing of the eyes - Fever - Seizures • Signs and symptoms for toddlers - Head enlargement - Vomiting - Headache - Irritability - Sleepiness - Loss of previous ability - Swelling on shunt tract - Fever - Seizures • Signs and symptoms for children and adolescents - Vomiting - Headache - Vision Problems - Irritability and/or fatigue - Personality changes - Loss of coordination or balance - Swelling at shunt - Difficulty at waking up or staying awake - Decline in academic performance - Seizures - Fever - Redness along shunt You may be hesitant to seek medical attention out of fear that you are overreacting to your child’s symptoms. 42

Children with shunts can get sick very quickly, so it’s better to be safe than sorry. This may result in some ER visits where they are seen, assessed and sent home with the assurance that everything is fine. By having your child assessed properly when symptomatic, when your child’s shunt fails they will receive the life-saving, prompt medical attention they require. Shunt revision When a shunt needs to be replaced it is called a shunt revision. There are many reasons a shunt needs to be revised: • Infection •A blockage in the shunt system •T he shunt is over or under draining for the needs of the child •T he catheter is no longer in an ideal position •T ubing is broken This is an example of a ventricular catheter (shunt) that has failed due to the in-growth of the choroid plexus, which is like the “seaweed” of the brain that creates the cerebrospinal fluid. It can plug the catheter and prevent CSF from entering and draining.

1.29 Failed ventricular catheter (shunt)

Signs and symptoms after a shunt insertion or revision After a shunt operation, you need to watch for infection or shunt malfunction. Seek medical help if you notice any of the following: • Fever (greater than 38 C) • Redness, swelling or pustules along shunt • Intense abdominal (tummy) pain • Headache after first seven to 10 days • Unusually tired and/or irritable • Vision problems • Fluid collecting or leaking along shunt tract • Bulging at the valve on the head • Seizures Reference: Toporck, C. & Robinson, K. (1999). Hydrocephalus: A Guide for Parents, Families and Friends. O’Reilly and Associates Inc.

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• Common Pediatric Neurosurgical Diagnoses •

INTRACRANIAL HEMORRHAGE (ICH)

Many children will be seen by a neurosurgeon if they have evidence of bleeding within the skull called intracranial hemorrhage. There are four types of ICH. ➊ Epidural hematoma is blood accumulated between the skull and outermost covering of the brain. (Hematoma is an accumulation of blood that is on the outside of a blood vessel not inside.) ➋ Subdural hematoma is blood accumulated on the surface of the brain between the dura and arachnoid mater. ➌ Subarachnoid hemorrhage is bleeding between

the brain and thin tissue that covers the brain. It usually presents with a sharp, sudden headache and can be accompanied by stiff neck, vomiting, altered consciousness and seizures. The headache is frequently in the back of the head or only on one side. ➍ Intracerebral hemorrhage is bleeding within the brain itself. It may be intraparenchymal (bleeding in brain tissue) or an intraventricular hemorrhage (bleeding into the ventricles of the brain).

INTRAPARENCHYMAL HEMORRHAGE

SUBDURAL HEMORRHAGE

INTRAVENTRICULAR HEMORRHAGE

1.30

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Charles Burke

EPIDURAL HEMORRHAGE

• Common Pediatric Neurosurgical Diagnoses •

Causes of ICH? The most common cause of blood inside the skull is trauma. This trauma may be as natural as the birth of your child on one extreme to a car collision on the other. Diagnosing ICH Important questions that you and your neurosurgeon will be trying to answer include: • How much unwanted blood is inside the head and does it need to come out? (This is because the blood is impairing brain functioning or significantly increasing the pressure in the brain.) • What compartment is the blood in: one of the coverings of the brain or within the brain substance? • What is the cause of the bleeding, trauma, underlying conditions or medication? • Does your family have a history of bleeding disorders? • What is the chance that the bleeding will happen again?

1.31 CT scan showing bleeding in the brain tissue (intraparenchymal)

MOYAMOYA DISEASE

Moyamoya disease is a rare condition that primarily affects children. The walls of the major intracranial blood vessels that supply the brain gradually narrow, restricting or blocking the blood flow. The body attempts to form “collateral” blood vessels to the brain that try to nourish the brain with enough blood supply. The term “moyamoya” means “puff of smoke” and was described by the Japanese as a descriptive term for the new small blood vessels that are formed in the condition. What causes moyamoya disease? The exact cause of moyamoya disease is unknown. We do know that in some children one side or both sides of the brain can be involved. We also know that children with certain conditions are more likely to develop this syndrome (neurofibromatosis type 1, cranial irradiation, sickle cell anemia, Down syndrome) 44

Your doctor will use many clues to solve these problems. The way the problem is solved is through history taking, blood work, assessing various pictures of the brain (CT, MRI, MRA, CTA or cerebral angiograms), surgery or time. The outcome for patients depends on many factors such as the extent of the bleed, how quickly it was treated and complications. Reference: “Intracranial Hemorrhages” by Elea Carey, published on July 30, 2012 healthline.com/ health/extradural-hemorrhage; Oliver, Z. (n.d.). Intracranial hemorrhage.CDEM Study Modules, retrieved April 2 2014 from cdemcurriculum.org/ ssm/neurologic/ich/ich.php

1.32 CT scan showing a child with a subarachnoid hemorrhage

What are the symptoms of moyamoya disease? The symptoms of moyamoya disease are related to the part of the brain that is affected by the blockage of the vessels. In children, the first symptom of moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”). Occasionally one can get a bleed in the brain, but in children ischemic strokes are much more common. Some children will present the disease with weakness or paralysis to one side of the body, severe headaches, speech problems, seizures, poor balance and involuntary movements. How is moyamoya disease diagnosed? Computed tomography (CT), magnetic resonance imaging (MRI), magnetic resonance angiography (MRA) and cerebral angiogram scans will help diagnose the condition. A cerebral angiogram will often show a blockage of the intracranial internal carotid artery with the development of The Compass

• Common Pediatric Neurosurgical Diagnoses •

1.33 Cerebral angiogram demonstrating moyamoya pattern of the blood vessels

an abnormal network of blood vessels (the “puff of smoke”). On occasion, children will have only one side of the brain involved. In addition, your surgeon may also do some more specific tests of the brain to see if any of the brain tissue is at risk for future strokes. In various centres, the medical team may use different types of tests to accomplish this (CT perfusion, MRI perfusion, SPECT, PET).

SPINA BIFIDA

Spina bifida is a common term that may describe an incomplete closure of the spinal column or the neural tube. There are three types of spina bifida: spina bifida occulta, spina bifida with meningocele, and spina bifida with myelomeningocele. In addition to this there are a group of disorders where the skin is closed but the underlying spinal cord has an abnormality. These disorders are called occult spinal dysraphism (OSD) and involve a different problem with embryology. • Spina bifida occulta (SBO) is a very common disorder where the back of the spinal canal is not completely closed and has no clinical concerns and for which treatment isn’t necessary. They are other groups of conditions that are sometimes under this category that we have included in a separate category called occult spinal dysraphisms (OSD). • Spina bifida with meningocele (SBM) is a condition where the covering of the spinal cord protrudes or pouches through the spinal bones. This pouch contains spinal fluid and is usually associated with minor physical impairments or no physical impairments at all. • Spina bifida with myelomeningocele (SBMM) is similar to a meningocele but the sac of fluid also contains parts of the spinal cord and nerve roots. This is the most severe form of spina bifida and may be associated with other neurological complications such as hydrocephalus, The Compass

Treatment of moyamoya disease Neurosurgeons may perform a revascularization procedure for the affected brain. Revascularization operations are generally classified as “direct” or “indirect.” For children with small vessels, an indirect approach is used. In one of these operations (pial synangiosis) an extracranial blood vessel is “rerouted” intracranially to help supply that side of the brain with more blood. These revascularization operations are generally well tolerated. The main risk, with and without any surgery, is stroke. Other treatments for moyamoya disease address only its symptoms or effects. For example, children at risk of stroke may be treated with blood thinners and those at risk of hemorrhage may be treated with high blood pressure drugs. Reference: ninds.nih.gov/disorders/moyamoya/ moyamoya.htm and wikipedia.org/wiki/ Moyamoya_disease, reviewed on April 19, 2014.

syringomyelia, and Chiari type II malformations. The majority of children will have bowel and bladder trouble, difficulty with walking, spinal problems, and may have breathing or swallowing difficulties. To learn more about syringomyelia, hydrocephalus and Chiari visit the write-ups about them in this section of the book. What causes spina bifida? The exact cause of spina bifida is unknown but environmental and genetic factors may play a role. Some studies show that low levels of folic acid in the mother during pregnancy may lead to an increased risk for the condition. How is spina bifida diagnosed? SBM and SBMM are usually diagnosed on a prenatal ultrasound or fetal MRI. A screening blood test done on pregnant mothers may also show a high level of maternal alpha fetal protein (AFP). Occasionally no abnormality is recognized until birth, in which case it is diagnosed by physical exam. SBO can be a more difficult diagnosis. Often an ultrasound or MRI of the spine are used to detect the underlying SBO. A thorough history and physical examine is necessary to determine if the SBO is symptomatic or not. Neurosurgeons may order a test called urodynamics to determine if the bladder function is being affected by the condition. 45

• Common Pediatric Neurosurgical Diagnoses •

Treatment of spina bifida Treatment of spina bifida varies greatly depending on the type. SBMM may require relatively urgent surgery at birth in order to place the spinal cord back into the spinal canal with adequate layers of covering. If the pouch is leaking fluid at birth then it will be covered with a sterile dressing and the initial operation to close the back will usually occur a very short time after birth. If the pouch is not leaking fluid, then the surgery will usually occur within 48 hours after delivery. A baby with SBMM may also have a shunt inserted at the same time as the closure of the back if they have significant hydrocephalus. If the hydrocephalus is mild to moderate, then the baby will be watched closely for

signs of increasing hydrocephalus over the next several days or even weeks. Other surgeries may be required to treat a symptomatic Chiari II malformation. Bowel, bladder and orthopedic issues usually occur later in life. Please see the sections on Chiari malformation and hydrocephalus for information on these conditions. Treatment of a baby with SBM again depends on if the sac is leaking fluid or not. If the sac is leaking fluid then the surgery will occur shortly after birth. If the sac is skin covered, and thus well protected and not leaking fluid, then the surgery may be delayed for hours or even weeks after birth depending on the size of the pouch. Babies with SBM will rarely require other surgeries such as the insertion of a shunt or a Chiari II malformation operation.

SYRINGOHYDROMYELIA (SYRINX)

Syringohydromyelia is a term often used in radiology reports to describe a condition where excess cerebrospinal fluid is present within the spinal cord. Often this condition may be termed as a “syrinx.” Your physician will focus on important points in the history, physical exam and radiographic studies of your child. History: • Does your child have back pain? • Does your child have any weakness or numbness in the arms or legs? • Does your child have any headaches? • Does your child have any curvature in their spine? • Does your child have any problems with their bladder function? • Is there any history of spinal trauma or spinal infections? Physical exam • Is there any evidence of an abnormal neurological exam? • Is there any scoliosis? • Are the feet the same size? MRI imaging • Is the syrinx large or small (a few millimetres)? • Is the spinal cord expanded? • Are there any abnormalities at the cranio-cervical junction? • Is there any evidence of a low-lying spinal cord? • Has the syrinx been growing? How is a syrinx diagnosed? MRI scans have been very beneficial in improving the ability to both detect and closely monitor these collections. Once a fluid collection is identified, it is usually prudent to image the entire nervous system to look for associated abnormalities. 46

1.34 Example of a cervical thoracic syrinx

What causes syrinx? The exact cause of syringohydromyelia is unknown. On many occasions the syrinx may be the result of abnormal spinal cerebrospinal fluid dynamics. This condition may be idiopathic (no known cause), or secondary to trauma, hydrocephalus, Chiari malformation, tethered spinal cord, and an intramedullary spinal cord tumour. What are the symptoms of syrinx? Most children with a syringohydromyelia are asymptomatic and are diagnosed incidentally during a neuroimaging procedure. Symptoms of a syringohydromyelia may be due to the direct pressure on the spinal cord from the fluid collection. Therefore, the symptoms will be related to the level in the spinal cord where the syringohydromyelia is located. Common symptoms include weakness, numbness, pain, incontinence and scoliosis. The MRI image above demonstrates a cervicalthoracic syringohydromyelia.

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• Common Pediatric Neurosurgical Diagnoses •

Treatment of syringohydromyelia If the syrinx is creating symptoms, the first treatment is to address the underlying cause of the syrinx. If there is a Chiari malformation or a tethered cord that is causing the syrinx, then the underlying cause will be treated. In the majority of cases the syrinx does not direct treatment. If your child has a small thoracic syrinx with no symptoms the neurosurgeon may elect to follow your child with repeat physical exams and/or neuroimaging. Direct treatment of the syrinx can involve

redeveloping a normal spinal subarachnoid space or draining the syrinx to the spinal subarachnoid space or via a shunt construct to the pleural or peritoneal space. Direct tubes in the spinal syrinx can be problematic due to blockage, migration or infection. There is no one superior treatment and the neurosurgeon will determine which will be indicated in your child’s specific condition. The surgeries are typically well tolerated and in many cases, children recover fully. Follow-up MRIs will likely be performed after the surgery.

OCCULT SPINAL DYSRAPHISMS (OSD)/ TETHERED CORD These disorders involve a problem with the development of the bottom part of the spinal cord and often occur in children with other problems in the urogenital and rectal development.

How is a tethered spinal cord diagnosed? Doctors are trained to look for clues that these conditions may widen. • Taking a medical history: The doctor will ask if your child has had an imperforate anus, urinary tract infections or kidney problems. • Physical exam: The doctor will look for abnormalities in the skin of the lower spine, such as subcutaneous fat, eccentric gluteal fold, hemangioma, tuft of hair, dermal sinus and dimples above the buttock crease and dorsal appendage. It is important to note dimples deep in the crease of the bum of an infant are common and often are not associated with OSD. A health care practitioner can properly assess the dimple and determine if further tests are warranted. Often an abnormality of the spine, such as a tuft of hair, red patch or dimple is noted on the physical examination of an infant. Health care professionals may then order an ultrasound or MRI of the spine. When this condition exists the doctor will try to determine if the spinal cord is tethered. A tethered spinal cord shows up on the MRI and/or a physical exam. Different abnormalities can cause a tethered spinal cord and you may hear terms like fatty filum, lipomyelomeningocele, terminal lipoma, split cord malformation and dermal sinus.

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What are the symptoms of a tethered spinal cord? Symptoms of a tethered spinal cord can include leg pain, back pain, trouble potty training or in older kids a new onset of accidents that can be both bladder and bowel in nature. Children may also develop orthopedic problems such as a foot that turns in or toe walking. Often a child may get a urodynamics test. Doctors insert a catheter into the bladder of the child and slowly fill the bladder to see how much it can hold, and how efficiently it can empty the water. An abnormal urodynamics will more likely lead to the recommendation of surgery. Normal urodynamics will often result in a more wait-and-see approach to the problem. Treatment of a tethered spinal cord If a tether is found there may be a controversy if surgery should be done. For example, if a fatty filum is found and the spinal cord looks tethered some health care professionals will advocate to surgically treat the condition by cutting the band of fat. Others will advocate a more conservative approach with multiple visits to ascertain if the child has become symptomatic, recognizing that many children will never go on to need surgery. Ultimately the doctors (neurosurgeons, urologists, orthopedic surgeons, physiatrists) consult with the parents to develop an individualized plan based on the age of the child, what type of tethering agent exists and the clinical exam of the child.

Notes

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Notes

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CHAPTER 2:

Hospitalization & Surgery

Illustration by PETE RYAN

Chapter 2: Hospitalization & Surgery 53

SECTION 2.1: PREPARING FOR ADMISSION • Talk to your child • Pre-admission clinic (PAC) visit before surgery • Packing checklist

SECTION 2.2: VISUAL SCHEDULE • My neurosurgery operation at the Stollery Children’s Hospital

SECTION 2.3: HOSPITALIZATION • The day of your child’s surgery • Pain and pain medications in hospital • Resources in hospital • Accommodations

SECTION 2.4: GOING HOME • Home care and follow-up • Wound care and complications • Common post-operative issues • Taking medications • Helpful hints • Preparing for outpatient clinic

SECTION 2.5: REHABILITATION • Glenrose rehabilitation • Orthotist directory

SECTION 2.6: PROFILES • Medical profile • Medic alert identification and jewelry • Hope stones

CHAPTER 2:

Hospitalization and Surgery You have just received news that your child will require brain or spinal cord surgery. Now what? Thinking clearly can seem almost impossible at this time. This section gives you information that will assist you on the next steps of your journey, preparing for and staying in the hospital. You will find information on how to emotionally prepare for surgery, what to pack, what to expect in the hospital, resources available and how to advocate for your child during this delicate time.

TIP: If your child is scheduled for routine immunizations please discuss this with your medical team. Some immunizations can have a delayed reaction like a fever or rash, and this could make it challenging for the surgical team to know whether it is an immunization reaction or a postoperative surgical issue. They may suggest postponing immunization until after surgery and recovery.

SECTION 2.1 – PREPARING FOR ADMISSION We know that coming to the hospital for surgery is a big event for you and your child. Take the time to talk together before coming – it will help prepare both you and your child.

TALK TO YOUR CHILD

Here are some tips to help your child feel safer about their upcoming surgery and hospitalization: • Take the time to listen to your child and let them express their feelings about the upcoming surgery. Plan for some quiet time together. • Be honest about what will happen, all the while reassuring them. • Use short, simple words or sentences appropriate for your child’s level of understanding. • Reassure your child that if something hurts, there are ways to help the pain, including medicine,

relaxation, listening to music and playing games. • Ask your child to pick out a favourite stuffed animal, book, or some music to bring to the hospital. • Encourage your child to ask questions and talk about their fears or worries. • Stay with your child if possible. If so, reassure your child that the Stollery has beds for parents to sleep beside their children on the ward. If you can’t stay, reassure your child that you will come to visit often. • Reassure your child that having to go to the hospital does not mean they have done something wrong.

PRE-ADMISSION CLINIC (PAC) VISIT BEFORE SURGERY

If your surgeon decides a pre-admission clinic visit is required, you will be contacted by the hospital staff prior to your child’s surgery. The PAC is located in the University of Alberta Hospital in unit 1C3 and the phone number is (780) 407-6890. It is located on the main floor next to the Rexall. During this appointment, you and your child will meet with a variety of health care professionals who will be involved in your child’s surgery and hospitalization. The clinic staff will provide you with preoperative instructions including when to stop feeding your child, The Compass

the time to arrive at hospital the day of surgery and any other special instructions. Expect this visit to take up to four hours as your child may need tests such as blood work or scans. Please pack any food, drink, formula, toys, iPads or books that your child may need during waiting times. It is very important to follow all of the instructions that you were given. Your child must not eat or drink anything prior to surgery. This is for your child’s safety during the operation. Every child’s surgery is different, so follow the directions closely. 53

• Prepare for Admission •

If your child takes medications on a regular basis, please follow the instructions given to you at your PAC visit. If you need to call and ask again, please call (780) 407-6890 during business hours. If your child is having anxiety about the upcoming surgery, ask the nurse in PAC to contact Child Life. Child Life is a great resource to help children gain a better understanding of their upcoming surgery by using props like dolls. A warm bath or shower and shampoo are a good idea the night before surgery. In the preadmission clinic you may receive special wash to use. Your child may wear pajamas to the hospital; however, they may be asked to change into a hospital gown. The best pajamas to wear in hospital are button-down tops as your child will have an IV in their arm. During your child’s surgery, you will be updated as to how things are progressing by the pediatric neurosurgery nurse practitioner whenever possible. Please provide the NP with your cell phone number as this is the easiest way to stay in touch. Don’t forget to charge your cell phone. Finally: your child is in the best possible hands, and we promise to take excellent care of them. Please remember, neurosurgery always takes time and a long surgery doesn’t mean that something is wrong.

PACKING CHECKLIST

Consider labelling all items and be cautious of bringing things that are very valuable. The hospital is not responsible for lost or stolen items. ❍ Button-down pajamas (two pieces) ❍ Underwear ❍ Slippers ❍ Toothpaste ❍ Shampoo ❍ Brush and hair accessories ❍ Hair dryer, if needed ❍ Eye glasses or contacts and solution ❍ Favourite blanket or pillow (optional)

IMPORTANT: • Clear fluids are liquids you can see through, such as apple juice, water and ginger ale. • REMEMBER: no milk and no orange juice. These are not considered clear fluids. • NPO (Nil per os) means nothing by mouth: no food or drink. • Your child’s surgery day or time may be changed due to unforeseeable reasons, such as your child’s surgeon being called to an emergency.

❍ Toy, stuffed animal, or electronic toys like an iPad ❍ Spare change for vending machine or store ❍ Health cards ❍ Medications (yours and the child’s) ❍ Cell phone and chargers ❍ Journal, diary and pen ❍ Books or magazines to read while waiting ❍ Your copy of The Compass

The Compass

SECTION 2.2 – VISUAL SCHEDULE My neurosurgery operation at the Stollery Children’s Hospital 1. AT HOME

2. WHEN I ARRIVE AT THE HOSPITAL

• When I get up, I MUST NOT eat or drink before I go to the hospital.

• I will go to Pre-Admission Clinic 1C3. • I will check in at the registration desk. I will get an ID band to put on. For my safety, I need to keep this band on.

• I may have to wait. There will be other children and families waiting too! I can bring something to do while I wait. There are also books that I can read and movies for me to watch.

3. GETTING READY FOR THE OPERATION

• I will meet my nurse. She will help me get ready for my operation.

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• The nurse will measure how tall I am and how much I weigh.

• I will be shown to a room to get ready.

• I will change into hospital clothes.

• Next I will have my blood pressure taken. I need to stay very still.

• Visual Schedule •

3. Getting ready for the operation (continued) • Then, I will have my temperature taken. Next is the band-aid with the little red light. This goes on my finger to check how I am breathing. I must not wiggle my finger.

•T he nurse will put magic cream on my right and left hands. The cream is covered by a clear band-aid. The magic cream may make my skin tingle. I cannot touch the magic cream.

4. IN THE OPERATING ROOM

• I will lie down on the bed. • The operating room is a very busy place. The lights are very bright. This bed is very tall and There will be people wearing green I may need help climbing gowns, hats and masks. It can be very into the bed. noisy in this room too! When I go to the operating room, I will meet the anesthesiologist (an-es-thee-z-all-o-gist). He is the sleepy-medicine doctor.

• I may need to breathe sleepy air from a mask. Don’t worry, it smells sweet, like strawberries! I will go to sleep for a while. While I am sleeping, my family will be waiting for me.

• A tube will be put where the magic cream is. It will not hurt. This tube is for water and medicine that I need for the operation. This is called an intravenous or IV.

• When it is safe for me, I will go to the unit that I will stay in: Unit 4D, or intensive care. I must lie very still and stay on the bed while it is moving.

• After the operation, I will go to the recovery room (or wake up room). Special nurses will take care of me while I am sleeping. I may feel dizzy or sleepy when I wake up. I will help the nurse by staying very still and not pulling at my tubes.

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• Visual Schedule •

4. In the operating room (continued)

• I will know I am arriving at the unit 4D because there are fish and dolphins on the roof. I can see my family now.

• I will most likely need to have my blood pressure and breathing monitored. That’s what the screen in the back is. I might have an IV pump to help give me medication.

• I can just relax. There is a TV at my bed with lots of channels to watch.

• The nurses and health team on the units are really, really nice. They will take good care of me. They will tell me when I can eat and drink again. I need to make sure I tell my nurse if I have pain. They can help make it feel better.

• When the doctor says I can go home, the nurse will remove the medicine tube from my hand. I can pick out a band-aid.

• I will change back into my clothes and I can go home. My family will get information on taking care of me at home. I need to rest and get better!

Visual schedule courtesy of Lillian Mah, RN. Stollery Pediatric Day Ward/Pre-Admission Clinic

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SECTION 2.3 – HOSPITALIZATION During your visit to the pre-admission clinic, you will receive a time for your child’s operation and a time that they want your child in hospital. It is important to be on time – take into consideration the weather, traffic and parking.

The day of your child’s surgery The main public parkade is located on 83 Avenue between 112 Street and 114 Street. There is a covered pedway on the fourth level that leads directly into the hospital. Underground parking and meter parking is also available. Please bring your child to 1C3, the pre-admission clinic. You can leave your child’s bags in the car because your child will not have a room assigned to them yet. You will have time to get these later. Bring a small bag of items that will help keep your child calm or occupied during the wait. First, staff will ask you to help your child change into a hospital gown or hospital pajamas. Next, medical staff will take your child’s vital signs, like blood pressure and temperature, and administer a pre-medication and a cream on the back of your child’s hands. This cream numbs the skin where the intravenous (IV) needle goes in, so it won’t pinch. You will be allowed to stay with your child right up to the time of surgery until they are taken into the operating room (OR). If your child would like you to come into the operating room with them, ask the anesthetist. When possible, they will try to accommodate. In the OR, medical staff will insert the IV and attach it to a clear bag of saline solution. This will keep your child hydrated and the anesthesiologist will use it to deliver medications to your child before and during surgery. As soon as your child is anesthetized (asleep), staff will escort you out of the OR. A good time to grab something to eat is immediately after your child has gone into surgery. The best place to wait is outside of the unit that your child is expected to go

PAIN AND PAIN MEDICATIONS IN HOSPITAL

Managing pain in the hospital is a major priority for the medical team. There are a variety of methods the team can use to make sure your child is comfortable. The two most commonly used methods in neurosurgery are: • Intravenous route: This method of pain management uses the IV line that medical staff inserted prior to surgery. The anesthesiologist or nursing staff uses it to administer pain medications directly into your child’s vein. Medications like morphine are common and are effective in controlling many types of surgical pain. Pain medications can safely be given as needed or via a continuous drip. 58

to after the surgery. There are awaiting areas outside 4D and PICU. Medical staff will take your child to the recovery room after surgery. Staff in the recovery room will make sure your child is stable, awake and comfortable before they transfer them to the assigned unit. The Stollery Children’s Hospital has limited private rooms. Most patient rooms have two beds in each. Each patient’s bedside has a single bed for one parent to stay 24 hours per day. There is a TV at each patient’s bedside and a bathroom in each room. Please be considerate of noise level and number of visitors. Your child may go to the ICE room after surgery, which is a step down from the ICU room, where there is one nurse for every two patients. Your child may also go to the PICU/NICU after surgery, which is the Pediatric Intensive Care Unit and the Neonatal Intensive Care Unit, respectively. These units most often have a one-to-one patient-to-nurse ratio. There are limitations on the number of visitors in the PICU and NICU, and it is important to call in at the entrance prior to entering. IMPORTANT: • Sometimes children can take a bit of time to wake up in recovery. • ICE stands for Intermediate Care Environment.

• Oral route: Your child may also take pain medication by mouth if the doctor orders it. If your child has pain, speak with your nurse. Having your child comfortable is crucial to their recovery. IMPORTANT: Codeine is not for children.

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• Hospitalization •

RESOURCES IN HOSPITAL

Most parents would agree that we are very fortunate to have a specialized children’s hospital in our city. The Stollery Children’s Hospital has an abundance of resources for families and patients. Find out here what’s available to you within the hospital during your child’s stay. • The Stollery Family Room: This is located at WMC 4H2.02. It’s a great place to relax, use the phone or access computers. There’s a fax machine and a photocopier you can use. There is a beautiful fish tank to enjoy. • Aboriginal Child Health Program: Contact an aboriginal care coordinator to learn about services available to Métis, Inuit and First Nations patients and families. The Kaw Kaw Koo Aboriginal Gathering Room is located at 5H2.04. • Care Pages: This offers families a free and easy way to communicate with friends and family. Care pages can be accessed at carepages.com/Stollery. Writing can be therapeutic and an effective way to communicate information directly to many people, without having to repeat it over and over or worry that you missed someone. • Child Life Programs: These offer services to help pediatric patients and families deal with their hospital experience. They offer play programs, teen support, one-on-one interaction, preparation and teaching for surgery or procedures. A calendar of events is outside 4 B1.08 or call (780) 407-6818. • The Stollery Family Centred Care Network: This is a group of people who are passionate about family centred care. To join or learn more email StolleryFCC@albertahealthservices.ca or call the family room at (780) 407-7255 for more information. • The Guru Nanak Dev Healing Garden: This space is on the fourth floor of the Mazankowski Heart Institute. It’s a calming environment filled with many soothing elements. The easiest way to get there is to take the hallway through Unit 4A, past the double doors and past the elevator; the hallway opens up to the healing gardens. It’s a great place to take a moment to yourself. • Kitchenettes: You’ll find them on patient units. They’re stocked with water and ice machines, toasters and microwave ovens, and snacks for pediatric patients. Fridge space is limited; all food must be labelled and dated. Please throw your old food out. • The Library: Located on the fourth-floor atrium, its hours are based on volunteer availability. • Parking Office: It’s on level zero and is open 8 a.m. to 4 p.m., Monday to Friday. You can purchase weekly or monthly parking passes. The Compass

© • Patient Relations: If you have questions or complaints, talk to your health care providers first. If you cannot resolve your concerns, call 1-855-550-2555 or visit albertahealthservices.ca and navigate to “Patient Relations.” There is an online form where you can register concerns, complaints or compliments about staff doing a great job. • The Prayer Centre Chapel: It’s located at 5H2.06 and it is open to everyone and every faith. • The Rapid Response Team: This is a specially trained team of health care professionals such as nurses and respiratory therapists who work in the intensive care unit but who take special equipment to other areas of the hospital to help with medical emergencies. If, in consultation with the bedside nurse, the family thinks that the child’s condition is deteriorating and the child needs immediate attention, the nurse can call the rapid response team. • Social Workers: They provide a wide variety of services to families during hospitalization. They have an abundance of skills from financial counselling, advocating, coordinating, and so much more. They provide assistance beyond the medical treatment. Each unit has an assigned social worker. Families can request to see a social worker at any nursing station, and social workers can be found in the social worker office WMC 1H1.26 Monday to Friday 9 a.m. until 4 p.m. Call (780) 407-8871. • Stollery Women’s Network: This is a group of passionate women who have a desire to support and encourage other women and the Stollery. Their twitter handle is @StolleryWomens. 59

• Hospitalization •

•T he Beach: OK, there’s no lake. But it’s a supervised playroom with activities available for pediatric patients. Level 4 outside Unit 4C and is open Monday to Friday. The teen room is open four afternoons per week. • Wireless Internet: It’s available to Units 4C, 4D, 4E, and 4F2. Visit the Family Room at 4H2.02 for a password and username. Wireless intranet is funded by the Stollery Children’s Hospital Foundation.

• Well Wishes: Family and friends can send Stollery patients and their families special greetings. Staff will receive the messages, print, seal then deliver them to the room within two business days. Visit albertahealthservices.ca/wellwishes. Reference: 2012, Alberta Health Services, Stollery Children’s Hospital Guide to Services for Patients and Families.

STOLLERY CHILDREN’S HOSPITAL MAP

See page 168 for more maps

MAP

SITE

GEN

Walter C. Mackenzie Health Sciences Centre 87 AVE

Jubilee Auditorium

Lister Hall

Edmonton Clinic North

Residence

Public Parking Entrance

➋

WALTER C. MACKENZIE HEALTH SCIENCES CENTRE

Future Site

Pedestrian/ LRT Crossing

➊

EMERGENCY

Clinical Sciences Building

Blood Donor Clinic

➍ Staff Parkade

Public Parkade

Aberhart Centre

CP ➤

Corbett Hall

83 AVE

Edmonton Clinic South

Cro Can ss Institcer ute

82 AVE

P UNIV

ERSI

TY A VE

➊ IC3 Pre-admission Clinic is located immediately to the right through this entrance ➋ Stollery Children’s Hospital Emergency entrance ➌ The Surgery Clinic is in the Clinical Sciences Building, on the main floor behind the elevators ➍ The parkade and the hospital are connected by a pedway

Ped Ped

84 AVE

➌

OUTPATIENT RESIDENCE

HEALTH SCIENCES LRT

RTF

85 AVE

83 AVE.

117

86 AVE

Zeidler Ledcor Centre

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Courtesy of albertahealthservices.ca

College Plaza

Medical Sciences Building

117 ST

HRIF

112 ST

OPR Outpatient

114 ST

Building

Heritage Medical Research

Katz Group Rexall Centre for Pharmacy & Health Research

ABC Aberhart Centre CSB Clinical Sciences

ABAC Admi Admi Adult Berna Cash Clinic Clinic A.H Adu Car De Fam Me Me

87 AVE

Sen Sur Cysto Day S Day W Derm Diagn EEG Emer Endo Facili Facul Food 112 Caf Caf He Mr Tre

• Hospitalization •

A FEW IMPORTANT POINTS – TAKE NOTE

If your child’s condition gets worse, communicate your concern with the medical professionals – a nurse, nurse practitioner, charge nurse or resident. If you feel that your concerns are not being addressed you can request the Rapid Response Team. Contact a social worker. They are located in the hospital and any nurse can call one for you. Social workers are an extremely good resource and can offer guidance and assistance with everything from parking and accommodations to government paperwork such as Family Support for Children and Disabilities (FSCD). While in the hospital, ask your bedside nurse questions. You are not expected to know everything, and having more knowledge about why they are doing things might provide comfort to you. Ask and write down questions and take them to your appointments or keep them close for doctor rounds in hospital. It’s equally important to understand the answer and write it down. While you’re in the hospital, you must take care of yourself. Keep healthy snacks at the bedside and remember to hydrate, set up respite care so you can go home and shower, sleep, or visit with other children. Set up CarePages to keep your family and friends informed of your journey. Ask your nurse or social worker for help. CarePages is easy to use. Before you go home, make sure you understand the next steps. Ask about follow-up appointments, supplies you may need at home and prescriptions. Make sure you know warning signs for complications. Make sure you have all your belongings and gather

YOU NEED TO EAT

• Mr. Sub Customized sub sandwiches, snacks and drinks 11 a.m. to 3 p.m., Monday to Friday • 112 Street Grill Snack Bar Burgers, pizza, pasta, drinks, coffee and snacks 10:30 a.m. to 10 p.m., Monday to Friday 6:30 a.m. to 10 p.m., Saturday, Sunday, holidays • Main Cafeteria 6:30 a.m. to 2 p.m., Monday to Friday Closed on weekends • Café Fantini Soups, sandwiches, snacks, specialty coffee 6:30 a.m. to 2 p.m., Monday to Friday Closed on weekends Located on the second level by the elevator • Tim Hortons/Wendy’s Located outside of the front entrance of the hospital emergency department entrances Open 24 hours per day

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cards from all of the professionals you will be seeing once you are home. Ask any visitors with any flu or cold-like symptoms not to visit for the duration of their illness. Phone calls and emails are always welcome. Ask all visitors to wash hands or wear a mask (if applicable) to protect your child during this delicate time. There are lots of hand sanitizer dispensers around the hospital. Know where the nearest one to your child’s bedside is, use it frequently and invite visitors to use it before visiting your child’s bedside. RESOURCES FOR FINDING A PEDIATRICIAN: • College of Physicians and Surgeons of Alberta, cpsa.ab.ca • edmontonareadocs.ca • Call Health Link at (780) 408-5465 (LINK)

“A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles…” - Christopher Reeve

• Subway Customized sub sandwiches, snacks and drinks 8511 - 112 Street Located outside of the main hospital entrance and across the street Hours of Operation: Monday to Friday: 7 a.m. to 11 p.m. Saturday and Sunday: 9 a.m. to 10 p.m. •B oth Sobeys and Second Cup are also available across from hospital.

• Hospitalization •

ACCOMMODATIONS IN EDMONTON

• Ronald McDonald House provides accommodation for out-of-town families with children receiving treatment in local hospitals. RMH features three kitchens, heated underground parking, a school for guests in Grades 1 to 12 and several spaces for families to gather, all at an affordable rate. RMH is located at 7726-107 Street NW. Contact Ronald McDonald House - North Alberta at (780) 439-5437 or rmhnorthernalberta.org for more information • Kids with Cancer Society supports children and teens with cancer and their families from the moment of diagnosis, during treatment and after. Kids with Cancer has a variety of programming services available such as advocacy and awareness, child/family support, financial support, research and more. Kids with Cancer has a house located a few blocks east from the hospital at 11135-84 Avenue Call (780) 496-2459 or visit kidswithcancer.ca. • Kids Kottage Foundation helps you support your other children. At any point during this journey, if you are having a difficult time managing and do not have support to help with your other children, the Kids Kottage Foundation is available. Reaching out for help doesn’t mean you’re a bad parent or unable to deal with the situation – you simply need to focus on your sick child. The aim of Kids Kottage

is to provide families with a bridge from crisis to calm and to provide a safe home away from home for children. Some of the services are: support for families in crisis; safe shelter for children ages zero10 years for up to 72 hours; free of charge; 24-hour crisis telephone line; stimulating play activities; positive parenting education; and emergency and regular respite. The 24-Hour Crisis Nursery is located at 13308 - 101 Street. Call the crisis line at (780) 944-2888, the administration line at (780) 944-HOPE (4673) or visit kidskottage.org. •H otel Options Signature Suites Campus Tower Hotel: 11145-87 Avenue NW, Edmonton, AB T6G 0Y1 (780) 439-6060. - All suites have a kitchenette, full bathroom, bedroom and living room. Special rates are available. There are a variety of other hotel options in the University and Whyte Avenue area. Outside of The Family Room (WMC 4H2.02) there is an Alberta Health Services pamphlet called “Lodging.” This pamphlet offers a variety of lodging options that are close to hospital or provide hospital rates.

Notes

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SECTION 2.4 – GOING HOME

Pete Ryan

As difficult as it is to be in the hospital with your child, you may have mixed emotions about going home. Managing pain, assessing wounds and identifying post-operative complications can all seem very scary and overwhelming. This section is designed to give you information to help you go home feeling more secure and confident. It offers you information on home care of a child post-operation, preparing for follow-up appointments, directions for creating a medical profile and where to get medical alert jewelry.

Home care and follow-up FOLLOW-UP APPOINTMENT

At the time of discharge, staff will give you a date and time for a follow-up visit, usually one to two weeks after your child’s surgery date. Mark it down on your calendar as soon as you get home. If for some reason you don’t have a follow-up booked, contact your doctor’s office. The Compass

You may also be prescribed medication to be used at home. It is a good idea to have it filled at the Rexall Pharmacy that is located on the main level of the hospital. Make sure you have all of your benefit cards with you. Take all prescribed medication as ordered.

• Going Home •

WOUND CARE

Your doctor or nurse practitioner will give you specific instructions about how to care for your child’s surgical wound. We have given some general wound care information below. A little swelling and pinkness around the incision is a normal part of healing. Ask your nurse or doctor what you should look for as signs of poor healing or infection. Some key signs are increasing swelling, redness, pus, fluid or leakage, or a wider or splitting wound. There may or may not be a dressing on the wound. Do not apply a dressing to a wound unless your doctor has advised you to.

IMPORTANT!

For serious concerns or emergencies, visit the Stollery Children’s Hospital Emergency Department, located at 8440-112 Street. • If you are out of town, proceed to your local emergency room. • If the physician believes your child needs to be assessed by neurosurgery, they will transfer your child to the Stollery. • It’s safer to have them accompanied by a medical team in case the condition takes a turn for the worse. If your child’s condition is life threatening, call 911.

If there are steri-strips (small tapes) on the incision, do not pick at them or pull them off. They will naturally fall off in one to two weeks. There may be some dissolvable blue sutures (stitches) in the incision. Never pull, cut or pick at them as it may take several weeks to dissolve. Medical staff will tell you when your child can resume showering. Most children should not bathe or swim for at least six weeks until the incision is fully closed and healed. This is important for infection control and wound healing.

CALL THE NEUROSURGEON OR NURSE PRACTITIONER IN CASES OF: • Fever of 38 C or over (37 C is normal) • Leakage of fluid from incision • Redness, swelling or pus around or from incision • Vomiting, especially if persistent, severe and not related to another illness • Headaches, if they are persistent with no relief and associated with vomiting or if they occur at the same time every day • Any pain not relieved with Tylenol or Advil

TEMPERATURE AND FEVERS

After your child’s operation it is important to monitor for a fever. Our normal body temperature is about 37 C or 98 F. Our body temperature fluctuates throughout the day and tends to be coolest in the early morning and highest in evening between 6 p.m. and 8 p.m. If your child’s temperature is greater than 38 C or 100 F it means they have a fever. A few things to consider when taking your child’s temperature are proper placement of the thermometer, in the ear, under the tongue or armpit. Also take into consideration if your child is overdressed or underdressed, if they are laying on the ear being tested, or if they just ate a popsicle or hot bowl of soup. These things will alter your reading.

FAHRENHEIT 104.0 103.1 102.2 101.3 100.4 98.6 96.8 95.0

CELSIUS

40 39.5 39 38.5 38 37 Normal 36 35

TIP: For small children, taking temperature in armpit is usually the easiest and most accurate.

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Common post-operative issues A few common conditions that can give parents or caregivers grief include constipation, nausea or vomiting and pain management. It’s always important to see your doctors so they can reassure you that the issues are, in fact, non-threatening, and not something more significant that might require medical intervention or hospitalization. It’s OK to err on the side of caution. Chances are you will end up in emergency at 2 a.m. to find the problem is something simple like constipation, which can be a normal kid issue. The truth is that your child has had brain or spine surgery and you have an extra reason to be cautious!

CONSTIPATION

Constipation can be a big issue for children post-operation as they are moving around less, on medications and might be afraid to use the washroom because of pain. Here are a few ideas: • Have your child drink plenty of fluids. • Encourage your child to walk around, as long as it is OK with their doctor. • Place a warm blanket on your child’s abdomen. • Encourage your child to be patient when sitting on the potty. • Serve high-fibre foods such as prunes, fruits such as raspberries, apples and pears with skin, vegetables such as carrots, whole grains such as whole grain pasta, bread, rice, beans, peas, nuts and seeds. • Talk to the doctor about a bowel routine for your child; they may order a stool softener or bowel stimulant. These are some common medications that may be ordered by your physician or suggested by a pharmacist: • Lactulose • Restoralax (Peg) • Colace • Senekot • Suppositories • Fleet enema

NAUSEA AND VOMITING

Having nausea and vomiting is miserable. Talk to your doctor or pharmacist regarding medications that are suitable for your child. A few other ideas are: • Encourage plenty of clear fluids (water, juice, ginger ale) to help prevent dehydration, but minimize milk products. • Avoid spicy foods and serve a bland diet such as toast, soup and crackers. • Serve small portions. • Have the child take a relaxing warm bath. • Make sure the room is well ventilated – consider a fan.

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BOWEL BUDDY-GET UP AND GO COOKIE A parent submitted this recipe. These cookies are a hit with our kids, and they are good for the bowels. • ½ cup margarine or butter • ½ cup prune puree (use canned baby food) • 1 cup brown sugar • 1 egg • 1 cup unsweetened applesauce • 2 cups all bran cereal • 1½ cups flour • ½ tsp baking soda • 1 tsp cinnamon or 1/3 tsp nutmeg • Optional: ½ cup to 1 cup raisins or chocolate chips Directions: In a large bowl, cream margarine with sugar. Add egg, pureed prunes and applesauce. Mix well. Add dry ingredients. Mix well. Drop by spoonfuls onto three cookie sheets (12 cookies per sheet). Bake for 15 minutes at 350 degrees. Cool on pan for a few minutes, then remove. Store in a covered container. These cookies freeze well. Limit to two per day.

• Bring an extra set of clothing for both you and your child, if you need to leave the house. • Bring a bucket, plastic bag or Ziploc bag, along with a towel, in case your child needs to vomit. • Keep your child’s head elevated with pillows, as lying flat might make it worse. • Watch for signs of dehydration when your child has a decreased amount of urine, such as a dry mouth and eyes, sunken eyes, dizziness, and/or headaches. Visit a doctor if you notice signs of dehydration.

• Common Post-Operative Problems •

PAIN

There is nothing worse than seeing your child in pain or discomfort. Pain management is also a top priority for the neurosurgery team. They don’t want to see their little patients in pain. Follow all prescriptions and doctor’s orders for administering pain medications. For medications that are given “as needed” for pain, keep track of the times it is administered so you know exactly when you can give the next dose. Give your child a warm bath for comfort, if allowed. If not, use a warm blanket. Offer a massage, and provide a soothing and calm environment. Encourage rest and relaxation.

As a diversion technique, try a simple craft, story, a movie or try colouring. If the pain is not getting better with the medications, seek medical attention. GOOD TO KNOW: • Tylenol / acetaminophen / Tempra are the same • Advil / Motrin / ibuprofen are the same

TAKING MEDICATIONS

Some children have a very difficult time taking medication especially in pill form. Here are a few Edmonton pharmacies that compound medications, meaning they will turn medications into liquids and flavour them for your child. Call before going to ensure they can compound your child’s specific medication or ask your local pharmacy if they will do it. • Dispensaries Ltd. 2925 66 Street NW, Edmonton, AB, T6K 4C1 (780) 461-3021 This location will also transfer medications made on site to another Dispensaries Ltd. for you to pick up at no extra charge. • Rexall Outpatient Pharmacy U of A/Stollery Hospital Pharmacy 8440 112 Street NW, Edmonton, AB T6G 2B7 (780) 407-6990 • LeMarchand Dispensary 3B, 11503 100 Avenue, Edmonton, AB (780) 482-3222 • Market Drugs 10203 97 Street, Edmonton, AB (780) 422-1397 • Terra Losa Shoppers 17220 96 Avenue, Edmonton, AB (780) 443-5800

HELPFUL HINTS

Have a good understanding of your child’s medical condition and history. Emergency departments do not keep records of your child’s condition. Consider creating a medical profile. • Get organized. You will have a lot of followup appointments and more tests. Get a calendar that you can have on you at all times and pre-book your children’s appointments. • If you notice something you are concerned about, get it checked out. Many clinics have a doctor on call on weekends or after hours. The contact information is usually available on the recorded message at your pediatrician office. • Health Link Alberta is available 24 hours per day and offers health advice. Your child must be with you during call. Toll-free: 1 (866) 408-5465 Edmonton: (780) 408-5465 • Remember that your child will also have the normal issues, like teething, constipation and colds. Try to keep these things in the back of your mind as you assess your child’s condition. It is never wrong to be worried and to seek medical attention.

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• Common Post-Operative Problems •

PREPARING FOR NEUROSURGERY OUTPATIENT CLINIC VISIT • Always bring your child’s Alberta Health Care card or the health care card from your province. • Bring any medical results that have been given to you since your last visit (especially if you are coming from out of town or another province). • Have a list of medications and dosage, including herbal and natural supplements and/or vitamins. • Bring all legal documents. - Legal guardians will need to bring paperwork - A parent without legal custody will need to bring paperwork to show that you can make medical decisions - Foster parents will need to bring legal documents that provide information about your casework or social worker • Arrange for sibling care as this allows you to concentrate on the child’s appointment, for it may take up to three hours. Your child may get a scan or x-ray.

•A ttend the appointment prepared with questions, comments and concerns (make a list between visits so you don’t forget). •A dvise the medical professional about your cultural beliefs, if it is necessary. • I t is always possible to have the Stollery Children’s Hospital arrange for an interpreter that best suits your family. Please give them advance warning should you require this benefit. • I f your child has a new rash, fever or has been exposed to chicken pox in the last three weeks, or if someone in your family has been recently diagnosed with tuberculosis, call the office as soon as possible to reschedule the appointment. •M ake arrangements for housing and transportation, if required.

Notes

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SECTION 2.5 – REHABILITATION

Pete Ryan

After surgery, some children will not go directly home – some will head to the Glenrose Rehabilitation Hospital. The next few pages will outline some of the services and programs offered by the Glenrose, as well as a list of orthotists available in Edmonton, if your child should require their service.

Glenrose Rehabilitation Hospital The Glenrose Rehabilitation Hospital offers a variety of programs that may be useful for your child’s recovery. Your child’s physician can make referrals if they think your child will benefit from the programming that the Glenrose offers. A few of the programs available for children are listed. • 1-2-3 Go!: 1-2-3 Go! is a group experience offered to children under three years of age who have complex needs due to neuromotor, neurodevelopmental or neurobehavioural problems. The multidisciplinary team provides intervention and treatment. • Feeding and Swallowing Services: This team helps children with feeding and swallowing impairments, providing counselling, education, treatment and follow-up. (780) 735-6066 • Neonatal and Infant Follow-Up Clinic: Health professionals will follow the progress of children from the newborn period up to 3.5 years of age and monitor their development and health progress. (780) 735-7971 • Pediatric Brain Injury Rehabilitation Program: This team provides rehabilitation for children with an acquired brain injury. Additionally, they provide assessment and intervention for children and teens. • Physical Medicine Clinic: This area deals with children up to 18 years of age who are experiencing difficulty with movement due to a 68

disorder of the developing brain (e.g. cerebral palsy). •P LAI- Preschool Learning and Intervention: This program provides short-term diagnostic treatment to preschoolers who have learning and behavioural needs. A multi-disciplinary team uses a family centred approach in its treatment groups. (780) 735-7971 •P rosthetics, Orthotics and Seating Clinics: This clinic offers a wide variety of custom and commercial orthotic bracing and artificial limbs. A variety of bracings are done for conditions such as scoliosis and helmets for cranial remodeling. •U nit 201: Glenrose also has an in-patient department that houses 10 in-patient beds and eight day-patient beds. This unit is a part of the rehabilitation department and most commonly admits children after orthopedic surgery, trauma, brain injury or burns. TIP: Family 2 Family is a parent support group offered by the Glenrose. You can call them at (780) 735-7989. For a complete listing of programs visit albertahealthservices.ca and enter “Glenrose Rehabilitation Hospital” in search bar. Reference: albertahealthservices.ca/services. asp?pid=service&rid=7240

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• Rehabilitation •

Custom orthotics, ankle-foot orthotics and bracing If your child requires custom orthotics or bracing, these are a few places in addition to the Glenrose that can assist you. • Karl Hager Limb & Brace 10733 - 124 Street (780) 452-5771 • Advanced Orthopedic Systems Inc. 14210 Stony Plain Road (780) 452-3321 • Orthotic Solutions Ltd. 7904 - 104 Street (780) 496-9312 • Northern Alberta Prosthetics & Orthotic 11024 - 127 Street (780) 452-9513

•O rthotic Consultants 11838 - 111 Avenue (780) 447-2267 •O rthotic Design & Manufacture 101, 10106 - 111 Avenue (780) 479-3275 • Bouma Orthotic Clinics Incorp. 141, 65 Chippewa Road, Sherwood Park (780) 417-7008

Notes

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SECTION 2.6 â&#x20AC;&#x201C; PROFILES The next two pages will give you an idea of how to create a medical profile for your child and where to get medic alert jewelry. Having accurate information makes caring for your child easier for the health professionals. As well, it makes your life easier if it is a late-night emergency room visit with a crying and sick little one. Print an extra copy for the triage nurse to keep. Blank downloadable versions of this sheet will be available on our website at neurosurgerykids.com.

Medical profile EMERGENCY CONTACT AND CURRENT MEDICATION INFORMATION PATIENT INFORMATION: Name:

Date of Birth:

Personal Health Care Number: Home Address: Mailing Address: Home Telephone:

Cell:

PHYSICIAN(S):

TELEPHONE:

SPECIALTY:

LOCATION:

HOME TELEPHONE:

CELL:

WORK TELEPHONE:

EMERGENCY CONTACTS: NAME:

RELATIONSHIP:

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• Medical Profile •

MEDICAL CONDITIONS:

ALLERGIES TO MEDICATIONS: CURRENT MEDICATION REGIMEN MEDICATION:

DOSAGE:

FREQUENCY:

CONDITION / SPECIAL NOTES:

DOCTOR:

REASON:

DATE:

RESULTS:

RECENT SURGICAL/MEDICAL HISTORY ER/OR/ADMISSION:

DATE:

MOST RECENT IMAGING IMAGING:

SHUNT PROGRAMMING SETTING:

DATE:

RESULTS:

TIP: You can add in any additional sections that you require: general overview, equipment, stretching and so on.

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• Medical Profile •

Medical Diary DATE:

SERVICE/PROCEDURE:

WHO PERFORMED IT?:

HE/SHE TOLD ME THIS:

TIP: Many smart phones have a medical identification profile that can be accessed on your password screen.

MEDIC ALERT IDENTIFICATION AND JEWELRY It is truly amazing how far medical alert jewelry has come. Boys and girls of all ages can now find bracelets, necklaces and labels that are fashionable and practical. Having a piece of jewelry your child likes makes it easier to expect them to wear it daily. Children don’t always understand the importance of medical alert bracelets. For a health professional to have the information on

a medical alert bracelet or necklace available in an emergency situation can literally mean the difference between life and death. There are many sites that offer fantastic medical alert items and can be found on the intranet. A few that we found are:

Lauren’s Hope laurenshope.com

Lovable Labels lovablelabels.ca

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• Medical Profile •

Med ID.com and Sticky Jewelry medids.com andstickyj.com

HOPE STONES

The Hope Stones program is available to medical children who have had brain/spine surgery, injury or conditions. Each tiny colored bead represents a single medical event such as a needle poke, a surgery, or an x-ray. Each bead also represents the strength, hope, tears, trials and tribulations our children and families overcome.

The Canadian MedicAlert Foundation The Canadian MedicAlert Foundation is a charitable organization that offers a No Child Without program to children in participating schools. Children from age four to 14 receive the MedicAlert membership for free. Visit nochildwithout.ca for information on enrolling.

To participate in this program, keep track of your child’s medical events on the next sheet. Then go to neurosurgerykids.com where you can submit your request for beads. Bead orders are completed once a month.

HOPE: The feeling that what is wanted can be had, or that the event will turn out for the best.

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â&#x20AC;˘ Medical Profile â&#x20AC;˘

HOPE STONES TRACKING SHEET

Dates from: ______________________ to: __________________________ DATE:

MEDICAL EVENT: Admission to hospital Attend camp Brain or spine surgery Biopsy Catheter, drains, tubes in or out Central line or PICC line Clinic visit (doctors appointments) Dental Discharge Dressing change ER visit EVD - External ventricular drain Glenrose hospital Intubation and extubation (breathing tube put in and removed) Isolation IV start and stop Major milestones MRI, CT scan or ultrasound NPO (nothing by mouth) Needle pokes & bloodwork Other tests and scans Orthotics - foot/hand/brace/helmets/leg Oxygen, bipap, cpap Other surgery Physio and occupational therapy PICU or NICU admission Procedure beads Satellite visit School Shunt infection Shunt or reservoir tap Suture or staple removal TPN (intravenous nutrition) Transfusion Transport of any kind Wound infection X-ray

Downloadable copy available at neurosurgerykids.com 74

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Notes

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Notes

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CHAPTER 3:

Education and Assistance

Illustration by CHRISTIANE BEAUREGARD

Chapter 3: Education and Assistance 79

SECTION 3.1: SCHOOL • Early education • School-age children • Effective communication with teachers • Inclusion • Advocacy resources for school and community • Information-sharing profile

SECTION 3.2: FINANCIAL ASSISTANCE • Government programs • Savings plans • Charities and associations

CHAPTER 3:

Education and Assistance SECTION 3.1 – SCHOOL

Christiane Beauregard

School is a fundamental part of any child’s life. This section will provide information on some of the programs available for your child’s education, tips for communicating with their teachers and creating a school profile.

Early education Programming for children with special needs will typically start before elementary school. A few programs in the Edmonton area that are often initiated at an early age include:

PROGRAM UNIT FUNDING (PUF)

Alberta Education provides Program Unit Funding (PUF) to children with severe developmental disabilities to support early childhood programs and kindergarten transitioning. Discuss with your early intervention worker about PUF programs available in your community. A few of these programs are: • Getting Ready for Inclusion Today (GRIT): In the GRIT program, each child will have a developmental specialist work with them in their home or community. The multidisciplinary team The Compass

and family are actively involved to help the child reach their full potential. •E dmonton Catholic Schools: ECS has a variety of programs such as 100 Voices and Pre-school Outreach that are available at locations all over Edmonton. For more information, visit ecsd.net/programs/early_learning/ pre_kindergarten.html or speak to an early learning consultant at (780) 638-6810. • Robin Hood Association: Robin Hood Association provides a variety of 79

• Early Education •

MY THREE-YEAR-OLD BOSS

by Jen Litzenberger “As a developmental specialist, I spend my days with amazing children either doing home programming, providing support at playschool or out in the community. Along with my team and the family, we set goals for the children, and my job is to incorporate learning into their play experiences. That said, basically, I am the student...and a three-year-old is my teacher! Each day my “teacher” gives me lessons on motivation, appreciation and dedication. Those are qualities I think we all need to learn about. We adults lose our ability to get back to the basics; kids learn most of what they know through play. What a fantastic way to learn. Imagine going to work every day and building a castle of blocks, playing with a train set or going for a walk to the park. That’s a child’s occupation, and I am so thankful I get to be a part of that. There are many challenges, but the rewards are endless. I get the chance to celebrate all victories big and small, whether it is a new word spoken, one more step or even a few seconds of eye contact. Kids are amazing little people that have the ability to accept that every one of us is unique. Through their curious nature, they can learn about all of our differences. I am honoured to have been welcomed into the homes of these families and that they have allowed me the opportunity to spend time with their wonderful children.”

Christiane Beauregard

services for the families of children with special needs. It has an early intervention program that is available for children up to three and a half years old to assist parents with accessing resources in their community. The association also has an early childhood program for parents of children six years and younger that offers a wide variety of services such as education, support, child development information and play groups. Learn more at robinhoodassoc.com. • Elves Special Needs Society: This programming is offered to children with severe delays. Visit elves-society.com or call (780) 454-5310 for more information. • Transitions: Transitions is a not-for-profit that provides support services to the families of people with developmental delays and disabilities in St. Albert, Sturgeon County and northwest Edmonton. It offers services from early intervention to community living for people over 18 years old. Visit transitions-ab.org or call (780) 458-7371.

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School-age children The school system encourages children to attend school in the neighbourhood in which they live because it encourages peer relationships in their community. There are many different programs available that can be beneficial for your child, so it is important for parents to do their research before enrolment. There are a number of programming options available in both the Edmonton Public and Catholic School system. The following are examples from the Edmonton Public School Quick Guide. (Edmonton Catholic Schools also has integrated programming – please visit the website at ecsd.net for more information.)

PROGRAMMING

• Regular program: Regular programming is offered in most schools but can be delivered differently depending on the school. Alberta education has a mandatory curriculum at all schools. • Alternative program: Some schools have a focus on a specific type of arts, athletics, language, faith or cultural philosophy while meeting the mandatory curriculum. • Special education program: Special education services are available at some schools. These programs will offer specialized services and support to children with special needs. - Behaviour and learning assistance helps students with chronic, extreme pervasive anti-social behaviours achieve academically - Challenge programming is for students with high-ability learning who have special needs - Community-learning skills/behaviour-learning assistance focuses on students with moderate cognitive disabilities and significant developmental delays

Some of the resources available through the schools division are physical and occupational therapy, speech pathology, social work and psychiatry. These consultants can provide tools and exercises that will help your child and family. Not all programming is available at all schools, so it is important for parents to do their research before enrolment. Visit the school’s website, Facebook page or attend an open house. Many schools have open houses from February to April. It is important to meet with the team (teacher, aide, principal, OT, PT, SLP and special ed coordinator) throughout the year to discuss programming progress. Working together as a team, you can create achievable goals. It is important to be realistic with your goals for your child but also to challenge them to be the best they can be. Educators are on our child’s side; they want them to succeed and they care about their accomplishments. Keep that in mind. Working together efficiently and respectfully will not only help your child – it will make the school experience better for everyone. GOOD TO KNOW: Some therapists who might work with your child are • occupational therapists (OTs) • physical therapists (PTs) • speech-language pathologists (SLPs)

Reference: patheights.epsb.ca/publications/index.shtml

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Effective communication with teachers School can be a stressful time for parents, especially if their child requires additional support and assistance. Mary Bowers, a multiple exceptional program teacher, has many top-notch tips for helping parents effectively communicate with teachers. Here’s what she had to say:

As a parent, it is important for you to read the IPP, make changes if necessary and ask questions. Some useful questions to ask are: ➊W hat teaching strategies can the teacher use to help my child fulfill the learning goals? ➋W hat support staff are available to help my child reach the goals? ➌W hat can I do at home to help my child reach the outlined goals? ➍W hat accommodations are in place for my child to help him or her reach the outlined goals?

Christiane Beauregard

•S tart early. It is important to set up a meeting with the teacher, principal and special needs aide at the school in June the year before to introduce your child and open up lines of communication about your child’s needs. It gives the teacher an ample amount of preparation time to think about ways of meeting and integrating your child’s needs. •B e short and sweet. Teachers receive many notes each day from parents. Since teachers want to focus their time on the students, it is important for parents to keep their notes short and to the point. If you have a very sensitive or confidential matter to discuss, consider setting up an appointment or sending a note in the agenda book for the teacher to call you directly. •B e patient, but be persistent. If you do not receive a reply immediately, wait a few days and send a follow-up note. Chances are, the moment the teacher sat down to reply to you something happened in the class that needed his or her attention. •M ake an appointment. Teachers have a set teaching plan each day and only a limited amount of time in which to implement it. When a teacher is pulled out of class to speak with a parent, it directly impacts student learning – that is, your child’s learning. ake another appointment. If the teacher is truly •M not listening or responding, then consider setting up an appointment with the principal. • J ust ask. Communication is especially important at the beginning of the year. Many school boards discourage emails or text messages. Agenda messages, leaving a message with the secretary or appointments are other options.

The creation of an individualized program plan (IPP) for children with special needs is a very important step in the schooling process. Information that teachers collect includes: • Previous assessments • Report card grades and comments • Information gained from observation • Selected work sample • Information provided by the parent • Information by other professionals

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Inclusion Having your child involved and included in the school community is a top priority for many parents. Jessica Bosma is a teacher and parent of a medical child with insight into addressing inclusion in the school system. Here is her wisdom: I am a teacher, but more importantly, I am a mother. Within the last year, I became the mother of a child with special needs. Throughout my career, I’ve worked with many different children with a wide range of needs, and have always held a special place in my heart for these children and their families. As a bystander to their struggles in the education system, I’ve always admired the strength of these families. Until I had a special needs child of my own, I had never experienced the pain that cuts so deep into your heart when you feel you are helpless to your child. Much of the journey of a special needs child is put into the hands of others. I strongly believe that the one place where this journey can be heavily influenced by the parents – with a deep vested interest and strong collaboration – is within the education system. On February 28, 2012, my then-15-month-old son Oliver was diagnosed with type one diabetes. I cried with fear for the future and the great unknown. I immediately asked myself, Would my son still have the same opportunities as the other kids? Would he be seen as “different”? What would his quality of life be like? The teacher in me worried. Would he be included? And what does inclusion mean for him once he enters the school system?

I strongly believe that one place where this journey can be influenced by the parents – with a deep vested interest and strong collaboration – is within the education system. A short six months later on August 12, 2013, at 21 months old, he was diagnosed with a brain tumour. Now I was plagued with even stronger concerns about his future. What if he never walks again? What if he needs a feeding tube? What if he can’t breathe on his own? What if he is severely delayed developmentally? Would he fit in with his peers? Will he be included in a regular classroom? Will his school system support him? Will they support our wishes for him? Will he receive all the support he needs? These thoughts consumed my mind. Even though my young son was not yet of school age, I wondered the same things about the daycare he would attend once I returned to work. For the first time The Compass

ever, I stood in the shoes of all my past special needs parents, and suddenly the topic of inclusion became clear to me in a whole new light. I know myself as a teacher, and I know that personally I would bend over backwards for any one of my students. I also know that there are some teachers who wouldn’t do the same. So what if my son has one of those teachers? Below, I briefly discuss the nine areas that I believe are very important when working on the inclusion of your child in the school system. Of course, nothing is written in stone and this is only my opinion as a teacher and a parent of a special needs child. ollaborate ➊C Get involved, and know everyone who will be working with your child. Collaboration is key. You do not have to like everyone in order to collaborate. Make phone calls, write emails and make yourself as visible at school and in the classroom as possible. Offer to help when it is needed and keep in contact with your child’s teacher and school employees that will be involved with your child. ➋E ducate The scariest thing as a teacher is when a child comes into your class with medical or special needs and you have no knowledge on how you can best support them. Teachers often “code” special needs children as part of the process of getting support for them. Codes are broad and they do not define the child. A code does not help me as a teacher plan for that child, as every child is so different. Set up meetings with teachers ahead of time, ask to speak at a staff meeting if you’d like to educate the whole staff, meet with teachers and principals consistently and provide support material like books, pamphlets, websites – anything that will help educate us on your child’s needs. The more we know as teachers, the more we can learn, and the better we can support your child. ave a vision ➌H Know what you want for your child. Create a vision and make a plan, long term and short term. Write it down, document it and keep record of everything that is important to you. Celebrate when your child achieves goals. Most importantly, share your vision with your child’s teacher so they can work together with you to achieve it. eek routines and consistency ➍S Routine and consistency in school is key to making children feel comfortable and secure. They can help 83

• Inclusion •

children work on their goals, and if you can advocate for your child to have supports in school, they can work towards a developmental goal. It is important to continue to work on this at home. There is nothing more frustrating as a teacher then having a child with consistent setbacks because they are not continuing the work at home. It takes a village to raise a child – keep it consistent. ➎U se inclusive language Inclusive language is delicate, but it is very important. The way that you speak to your child and about your child is the way their teacher and classmates will speak to and about them. Speak to your child the way you would speak to any other child – your child is not defined by their differences. Choosing the wrong words can hurt your child and make them feel like an outsider. Inclusive language strives to promote all people, regardless of difference, as full and valued members of society by selecting vocabulary that avoids exclusion or makes one feel less valued than others. If you hear your child’s teacher using language that is not inclusive or sets your child out as different, point it out. Remember that teachers are often multitasking, working with many different children, sometimes we unintentionally slip up and we won’t be hurt if you remind us of important things like this. ➏ Advocate No one will advocate for your child the way you will. Teachers and principals will help – they know the paperwork and they know the ropes, but you know your child. If you want an assistant for your child, fight for it; if you believe your child needs extra supports or services, fight for them. Decide what you want for your child and be their advocate. The school system can be very difficult and tiring, but let the teachers know what you want and what you’re trying to achieve and don’t give up until you get it. Still, be reasonable in your requests. It is always attainable; it’s just a matter of advocating for what you want. on’t be afraid ➐D The school system can be scary, especially if your child is just entering kindergarten. You will probably be full of questions and concerns, but don’t be afraid. Teachers are there because they are invested in your child. We genuinely want to help and we want to make your child feel included and have the very best possible experience. Don’t be afraid to let go of some control and let the experts

at the school help, and don’t be afraid to let us into your world. Understanding your daily struggles and your concerns will help us create a better plan for your child. ➑ Make your child an equal If you expect others to treat your child as an equal, then you need to do the same. As a parent, I know I would never intentionally single my child out or be overbearing, but I also know that it can happen without realizing it. Don’t intervene unless it is needed; let your child interact with their peers and allow them to take some falls and to feel disappointment. Let them celebrate success without their parents holding their hands. This is important for all children, especially yours. It is critical for emotional and social development and it is something that all children experience. When they do something great, let their classmates celebrate with them and allow your child to do age-appropriate activities within their classroom. If this means letting go and watching from outside the window, that’s OK! By doing this, you are putting your child on a level playing field with their classmates. They are equal, regardless of what their medical condition is. ➒ Use the supports you are given If your child is given an assistant, offer to work with them and teach them about your child. Meet with OTs, speech therapists, physiotherapists, counsellors, teachers, principals and inclusion consultants. Take all the support you can get and use it to the best of your child’s advantage. Remember they are there for your child, let them know what you think is working well and where you think it could be better or different. Your child is going to spend 13 years in school and even more if they continue on to higher education. School should not be something that is feared – you should love your child’s school and your child should love school. I hope that I have captured some key points to help you as a parent or guardian feel better about entering your child into the school system. My experience with Oliver has changed my opinion on inclusion and the ways in which parents and teachers can work together to provide the best experience possible. Of course, everyone will have a different experience, but as a parent, if you dive in head first with a clear vision of what you would like for your child, you will experience success and your child will be happy – they will love school.

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Advocacy resources for school and community Advocating for your child in the community and school system can be an overwhelming task. The following agencies focus on family advocacy and support: ➊ The Edmonton Coalition This is a group of eight organizations dedicated to the inclusion of children with special needs and the support of their families. ➋ Alberta Association for Community Living This is a non-profit group that represents the interests of children and adults with disabilities. They advocate for issues from inclusive education to community living.

PARENT-PROVIDED TRANSPORTATION In some cases, parents of students with special education needs may receive a subsidy for parentprovided transportation when a reasonable level of

APPLYING FOR A SUBSIDY

If Student Transportation determines that a reasonable level of yellow bus service can’t be provided, you can apply for a subsidy by completing the parent-provided agreement form.

AACL provides free consultation services to teachers in modifying and adapting curriculum. They have a large variety of resource material and offer in-services and workshops. Visit aacl.org or call (780) 451-3055. ➌G ateway Association for Community Living This association provides support and education for individuals and families regarding public awareness, training and advocating services. Learn more at gatewayacl.org or call (780) 454-0701.

yellow bus service can’t be provided. Only one subsidy will be provided for parents transporting more than one child to the same school.

For more information about the parent-provided transportation subsidy, contact Student Transportation or your child’s school office.

Notes

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Information-sharing profile There are a variety of ways parents can share information about their child’s medical ailments, their vision and goals. The next few pages will offer you examples of ways to present information to your school community. This profile could be used for school, daycare, caregiver, friends or families.

PROFILE: JOHNNY B GOODE Nickname: Jon Age: 5

Christiane Beauregard

Section 1 - Peronal information • Personal information such as name, nickname, birthdate.

Section 2 - About me •A bit of information about your child’s strengths, interests and social involvement. Putting a few pictures of your children doing something they love is a great addition to this document. You can choose to do point form or paragraphs.

Section 3 - Challenges • Information about things that may be challenging for your child either emotionally or physically. Things to avoid would go in this section.

ABOUT ME • I am a fun and happy three-year-old boy • I love my Mom and Dad, and I absolutely adore my brother • Playing with trains is my favourite thing to do • I love watching the Magic School Bus and Leap Frog videos

THINGS I DON’T LIKE • When I am left out, I feel sad • The feeling of sand • Spinning around in circles • Loud noises • When people doubt my ability

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• Information-sharing profile •

Section 4 - My diagnosis • Use this section to offer some information about your child’s diagnosis, keeping in mind any information to help the teachers or other caregivers understand the condition. You can create another section for medications, medication side effects, allergies and previous surgeries.

MY DIAGNOSIS IS CEREBRAL PALSY Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain. Cerebral palsy is neither progressive nor communicable. It is also not “curable” in the accepted sense, although education, therapy and applied technology can help persons with cerebral palsy lead productive lives.

MY MEDICATIONS The medication that I take is for my tight muscles. It is called _____________ and it can make me sleepy during the day. I also need to avoid eating certain foods like _____________ because it doesn’t react well with my medication. Section 5 - My equipment • This section gives information on any assistive equipment or devices that your child may require. Including a picture is helpful. Include: braces/ orthotics, mobility devices like walkers/canes/ wheelchairs, communication devices, oxygen or breathing, etc. Section 6 - Warning signs • If your child has a condition that would require close monitoring for warning signs you might want to create a section here for that. The more information we provide to our teachers and caregivers the better they will be at identifying warning signs.

MY EQUIPMENT The equipment I need to use daily is my cochlear implant. It has been surgically implanted because I have a hard time hearing you. Sitting close to me will also help me hear you better.

WARNING SIGNS I have a shunt, it helps drain fluid from my brain. If my shunt becomes infected or obstructed I can get very sick. Please watch for these symptoms to keep me safe: • Bulging at the valve site • Frequent and increasing severity of headache • Numbness or change in sensation to one side of the body • Balance is off • This is just a sample, list is not complete Review the information with your child’s doctor to confirm accuracy and include additional handouts.

Section 7 - Additional information • Include anything else your teacher should know about your child. Include anything you think will help your child find more success in their program. Include a favourite quote or picture.

HELP ME BE SUCCESSFUL BY... • Speaking slowly and using short sentences • When my hand shakes when colouring, put your hand on mine • Be patient. I am trying really hard • Give me time to reply. Sometimes it takes me a few minutes to get the message from my brain to my mouth • Involve me in everything I AM A NEUROSURGERY HERO!

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• Information-sharing profile •

LETTER TO PARENTS

Writing a letter to other parents of kids in your child’s class helps provide information, break the ice and

Hello, We are the Jones family and we would like to introduce you to our son Preston! This year Preston will be attending kindergarten with your child and we are very excited! Since our kids are going to be spending the school year together we thought it would be a good idea to share a bit of information about Preston with you. When Preston was one month old, he was very sick with an infection in his brain called meningitis. He spent a few months in the hospital, fighting to get better and thankfully he did! Preston now requires a wheelchair to help him get around because his leg muscles are tight. He loves when his friends push him around slowly. Our little boy is very smart and social. He has a very good

demystify your child’s condition. Keep it short and to the point. For example: understanding of what is going on and loves being included in everything. Over the last year, Preston’s vocabulary has exploded from hundreds to thousands. Sometimes, it takes a bit of work for him to put his thoughts into words but we know that his new amazing friends will take the time to listen. We look forward to having a fun and successful year together. If you have any questions please feel free to ask – we love talking about our son. Sincerely, Tim, Lillianna and Preston Jones

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SECTION 3.2 – FINANCIAL ASSISTANCE GOVERNMENT FUNDING AND RESOURCES AND GOVERNMENT SAVING PLANS Whether it is a therapy that is not covered, a modification to your house or a specialized piece of equipment, it all costs money. We have compiled a few organizations that can offer assistance. If your health care provider is making a recommendation, they are often willing to help with the quotes and referrals. Let them help with the paperwork; it is one less thing you have to worry about.

Government programs ALBERTA CHILD HEALTH BENEFIT

The Alberta Child Health Benefit plan pays for health services that are not available through standard Alberta Health Care insurance, such as eyeglasses, prescription drugs and dental claims. This health plan is for children up to age 18, but

PROGRAMS ALBERTA

This website offers a wide variety of information on raising children, from newborns to six-year-olds, with medical or special needs. It has information on issues

ALBERTA AIDS TO DAILY LIVING (AADL) Albertans with a long-term disability, chronic or terminal illness can receive financial assistance by AADL to buy medical equipment and supplies. This service will help with things like walkers, diapers, specialized bracing, specialized seating, catheters,

DISABILITY TAX CREDIT

Take a moment to do the eligibility survey to see if you or your child is eligible. Many eligible people don’t apply! The disability amount is a non-refundable tax credit that a person with a severe and prolonged impairment

DISABILITY PARKING PLACARD

Your pediatrician or physical therapist can do this paperwork for you. To be eligible you or your child must be unable to walk more than 50 metres (150 feet). Shortterm, long-term and permanent disability placards are available. Fill out the paperwork in your child’s name even though you are the driver. The registry service also needs

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additionally up to age 20 if they live at home and are attending high school up to grade 12. There are no fees to sign up. Income is a factor for eligibility. Call (780) 427-6848 or toll free 1-877-469-5437, or visit employment.alberta.ca.

such as finances, childcare, learning, schooling, daily care and behaviour. Lean more at programs.alberta.ca.

wound and ostomy supplies and much more. Families are responsible to pay a portion of the cost, but there is a yearly out-of-pocket maximum. Make sure you take note of when the year cycle starts, as it is usually not January to January.

in physical or mental functions can claim to reduce the amount of income tax. You and your practitioner will need to fill out FORM T2201, DISABILITY TAX CREDIT CERTIFICATE. Call 1-800-387-1193, or visit cra-arc.gc.ca.

a copy of the child’s birth certificate. Placard holders also have the option for license plates with a disability logo. Go to servicealberta.ca to learn more. Vehicles displaying the provincially issued disabled placard are permitted to park at City of Edmonton parking meters.

• Government programs •

Disabled placard holders are permitted to park at on-street parking meters free of charge for the specified duration of the meter: • 15 minutes free parking at 15-minute meters • 30 minutes free parking at 30-minute meters

EARLY INTERVENTION PROGRAM

This program offers good help – take the time to call if your child is between birth and three and a half years old. They will offer you guidance. Early Intervention provides support and information to families who have a child with two or more developmental delays or a diagnosed disability aged between newborn and three and a half years old. An early interventionist can come to the home to give developmental strategies, offer parent support, and help navigate accessing community agencies and resources. They offer playgroups, parent groups, and they are a wealth of knowledge. Parents should call if they have concerns about their child regarding attention, movement, feeding, hearing, behaviour, social interaction or overall development. Please visit the following links for more details about this service at various locations.

• Two hours free parking at two-hour meters • Five hours free parking at five-hour meters Get all the details by calling 311 or visiting edmonton.ca/transportation/driving_carpooling/parkingmeter-rates.aspx.

• Alberta School for the Deaf • Connect Society, south entrance 6240 113 St., Edmonton, Alberta T6H 3L2 (780) 454-9581 • Children and Youth Centre - Room 101 - 3 Spruce Avenue, Sherwood Park, Alberta T8A 2B6 (780) 640-9401 - Dickinsfield Mall - Room 25 - 9228 144 Ave., Edmonton, Alberta T5E 6A3 (780) 342-1707 - Spruce Grove Health Unit - Suite 110 - 505 Queen St., Spruce Grove, Alberta T7X 2V2 (780) 342-1300 - Transitions St. Albert - 365 Carleton Drive, St. Albert, Alberta T8N 7L1 (780) 458-7371

EMPLOYMENT INSURANCE (EI) SPECIAL BENEFITS FOR PARENTS OF CRITICALLY ILL CHILDREN

If you are absent from work to care for a critically injured or ill child and you meet the criteria below, you might be entitled to receive EI special benefit (PCIC). To be eligible for the PCIC benefit, your regular weekly earnings from work have decreased by more than 40 per cent because you need to provide care or support to your critically ill or injured child; you have accumulated 600 insured hours of work in the 52 weeks prior to the start of your claim, or since the start of your

last claim, whichever is shorter (this period is called the qualifying period); you are the parent of a child who is critically ill or injured; your child is under 18 years of age at the time the 52-week window during which PCIC benefits can be paid opens, based on the date the specialist or medical doctor states that your child became critically ill or injured. Contact servicecanada.gc.ca or your unemployment office for details.

FAMILY SUPPORT FOR CHILDREN WITH DISABILITIES (FSCD) FSCD offers support for respite, child care, sibling care, mileage, clothing allowance, domestic assistance, and more. If your child has impairment in two areas (speech, gross motor, fine motor, self care) ask about specialized services. Call (780) 427-4354 or visit child.alberta.ca. Additionally, programs.alberta.ca features helpful information of FSCD and frequently asked questions. Look under “Persons with Disabilities.”

This is a crucial step. Take the time to fill out the paperwork or have a social worker help you. You need to have a diagnosis for your child. This program offers assistance for respite care, shoes, home making, mileage, parking and other services. Don’t let the name deter you from looking into this – they offer support for a large variety of conditions. They do not give you retroactive pay, however, so call sooner rather than later. TIP: Filing out paperwork for Family Support for Children With Disabilities (FSCD) is a crucial step to getting the help you need.

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• Government programs •

HEALTH LINK ALBERTA

This is a 24-hour, seven-day-a-week province-wide nurse telephone advice and health information service. Call toll-free at 1-866-408-LINK or call Edmonton Capital Health Link at (780) 408-LINK.

NON-INSURED HEALTH BENEFITS (NIHB)

This is a national program that provides coverage to registered First Nations and recognized Inuit families. Non-Insured Health Benefit Program helps cover the costs of a limited range of goods and services that aren’t

If your child is sick and you are calling for health advice you must be with your child so they can do an assessment with you over the phone. Visit myhealthalberta.ca

covered by primary health coverage To find out more about the NIHB, please contact First Nations & Inuit Health at (780) 495-2694, or toll free at 1-800-232-7301.

RESIDENTIAL REHABILITATION ASSISTANCE PROGRAM RRAP FOR PERSONS WITH DISABILITIES RRAP offers financial assistance to allow homeowners and landlords pay for modifications to make their property more accessible to persons with disabilities.

SAVINGS PLANS

Registered disability savings programs • Registered Disability Savings Plan • Canadian Disability Savings Grant • Canadian Disability Savings Bond A Registered Disability Savings Plan (RDSP) helps Canadians with disabilities and their families save for the future. Anyone who is eligible for the disability tax credit and is under the age of 60 may be eligible for an RDSP.

Call them at 1-800-668-2642 or visit them on the internet at servicecanada.gc.ca.

How do I apply? ➊O btain a social insurance number for your child. 1-800-622-6232 servicecanada.gc.ca ➋O pen an RDSP at the major financial institution of your choice and apply for the grant and the bond. disabilitysavings.gc.ca

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Charities and associations CHARITIES

Alberta Orange Foundation for Children This foundation supports individual children and registered charitable organizations aiding orphaned, handicapped and underprivileged children who are 18 years of age or younger in Alberta. Speak to someone from the foundation by calling (780) 467-1161. Burns Memorial Fund Grants are available to improve and sustain the quality of life for special needs children in low-income families by providing funds for services and equipment. Learn more at burnsfund.com/programs/childrens-fund or email the fund at info@burnsfund.com. Canadian Cancer Society The Canadian Cancer Society provides transportation subsidy assistance for travelling to and from cancer treatment and follow-up appointments. They also have compassionate financial assistance programs. Eligibility is based on meeting certain criteria. Read more at cancer.ca. Canadian National Institute for the Blind CNIB supports individuals who are blind or partially blind. CNIB provides support for guide dog assistance, scholarships and bursaries and much more. Visit cnib.ca for more information. Cerebral Palsy of Alberta The Cerebral Palsy Association in Alberta (CPAA) is a registered non-profit organization that supports people affected by cerebral palsy and other disabilities in the Province of Alberta. You must be a member, so sign up today at cpalberta.com. Children’s Ability Fund The Children’s Ability Fund mission is to enhance the independence of persons with disabilities throughout northern Alberta. They do this by providing funding for specialized equipment. Call them at (780) 454-9191 or visit them on the web at childrensabilityfund.ca. Children’s Wish Make-A-Wish Northern Alberta grants wishes to children living with life-threatening medical conditions. Their aim is to enrich the human experience with hope, strength and joy. Contact them at 1-800-267-9474 or childrenswish.ca. Dreams Take Flight This is a national volunteer charitable organization dedicated to providing the trip of a lifetime to 92

physically, mentally or socially challenged children. Learn more at dreamstakeflight.ca. Easter Seals Regardless of age, disease or disability, Easter Seals help with accessibility and mobility equipment to enhance quality of life for Albertans with special needs. Visit easterseals.ab.ca for more information. Edmonton Civic Employee Benefit This organization provides special aid assistance and scholarships for children. You must be a contributing member of the organization – nine unions and associations are members. Visit ececaf.ca for more information. For the Love of Children Society of Alberta This organization helps special needs children and children who are suffering from high-risk, life threatening illness or trauma in Canada and overseas. They organize fantasy flights and programs for children at risk. Visit fortheloveofchildrensociety.org. Good Neighbour Fund This is a registered charitable organization that provides limited financial resources or assistance to individuals in Edmonton and Northern Alberta. For more information, visit goodneighbourfund.ca. Kids Cancer Foundation of Alberta (formerly Kids Cancer Camps) KCFA helps children and their families facing childhood cancer by providing programs and funding in areas, including camp, for young people and their families affected by cancer, pediatric oncology research, clinical support, and by providing education (post-secondary preparation/post-secondary) bursaries to young adults who have a history of childhood cancer. Learn more at kidscancercare.ab.ca and get in touch with them at staff@kidscancercare.ab.ca. President’s Choice Children Charity PC considers applications from families whose children have been diagnosed with a range of disabilities, including cerebral palsy, autism, muscular dystrophy, spina bifida and other various developmental disabilities. To qualify, the household annual income must be $70,000 or less. They provide direct financial assistance in the purchase of mobility equipment, wheelchair accessible modifications, and more. Call them at 1-877-525-4762 or visit presidentschoice.ca.

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• Charities and associations •

Rainbow Society of Alberta The Rainbow Society of Alberta is dedicated to fulfilling wishes for Albertan children between the ages of three and 18 who have a chronic or life-threatening illness. Check out rainbowsociety.ab.ca/about/default.asp for more information.

year-old, live in Canada and be able to formulate their dream (this must be the dream of the child) and be able to communicate their dream with or without technical assistance. No consideration is given to a child who has received a dream or wish from a similar organization. Call 1-800-461-7635 ext 224, or visit sunshine.ca.

Shriners Children Hospital This hospital provides world-class care with a host of orthopedic and neuromusculoskeletal disorders in a family-focused environment. Shriners is committed to helping children improve their quality of life and achieve as much independence as possible. Read more at shrinershospitalsforchildren.org/Hospitals/ Locations/Canada.

www.wheelchair.ca This site lists funding sources for equipment, in addition to car manufacturers that provide discounts for alterations to vehicles needed to accommodate individuals with physical disabilities.

Sunshine Dreams for Kids This organization grants wishes to kids with severe disabilities and life-threatening illnesses. To qualify, the child must be between the age of three and prior to their 18th birthday, have at least the cognitive ability of a three-

ASSOCIATIONS

• AACL Alberta Association for Community Living (780) 451-3055 aacl.org • Arthritis Society Alberta and Northwest Territories Division (780) 424-1740 or 1-800-321-1433 ext 1 arthritis.ca • Autism Society (780) 453-3971 autismedmonton.org • CNIB (Canadian National Institute for the Blind) (780) 488-4817 cnib.ca • Canadian Paraplegic Association canparaplegic.org • Connect Society connectsociety.org • Edmonton Cerebral Palsy Association edmontoncp.com • Edmonton Cystic Fibrosis Society ccff.ca • Edmonton Food Bank edmontonfoodbank.com • Edmonton Epilepsy Association edmontonepilepsy.org

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Walter and Wayne Gretzky Foundation for Blind Youth of Canada This organization provides academic post-secondary education scholarships to eligible blind and visually impaired students. Visit the website at cnib.ca/en/about/awards/scholarships/wgs for all the details, or call (519) 459-8665.

•E dmonton Down Syndrome Society (780) 944-4224 edss.ca •E dmonton Garrison Family Resource Centre (780) 973-4011 ext 6300 familyforce.ca •F amily Centre the-family-centre.com • Gateway (780) 454-0701 gatewayassociation.ca •M uscular Dystrophy Association Canada (780) 486-1948 muscle.ca •M ilitary Family Resource Centre mfrcedmonton.ca •S pina Bifida and Hydrocephalus Association (780) 451-6921 sbhana.org •W ar Amps 1-800-267-4023 waramps.ca

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CHAPTER 4:

Therapy, Fun & Products

Illustration by CAROLINE HAMEL

Chapter 4: Therapy, Fun & Products 97

SECTION 4.1: COMPLEMENTARY THERAPY • Physiotherapy, occupational therapy and speech therapy • Complementary therapy

SECTION 4.2: FUN • Accessible sports and programs • Camp and adventure trips • Funding for sports • Bike program • Special Edmonton summer events • Camp and adventure trips • Travel insurance

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SECTION 4.3: SPECIALIZED PRODUCTS • Clothing, shoes and specialized products • Mom tips • This and that • Jack-of-all-trades

CHAPTER 4:

Complementary Therapy and Fun SECTION 4.1 – COMPLEMENTARY THERAPY The purpose of this section is to provide you with information about alternative therapies. Always seek the advice of your doctor or other health care professionals before undertaking any of these therapies. It is also important to get approval from your surgeon before initiating a therapy, as there may be limitations or restrictions that need to be considered. Each therapy offers something different and may or may not be suitable for your child. Below is a list of some available therapies. We are unable to list every therapy or facility available in Edmonton, but the internet is a great resource for finding more. Remember to always keep your receipts for taxes; your accountant can help you learn what expenses you can claim.

Physiotherapy, occupational therapy and speech therapy When your child is in the hospital or at the Glenrose, they will have access to many professionals such as physiotherapists, occupational therapists and speech-language pathologists. Here are a few options you can find in the community.

PHYSICAL THERAPY

• Summerside Physical Therapy The pediatric rehab services include physiotherapy and occupational therapy for a variety of conditions. From medically fragile infants to teenagers who feel uncoordinated, they offer neurological rehabilitation for all ages. summersidephysio.com (780) 466-8676 • Pediatric occupational therapy mindfulmovementinc.com • Speech and language Encouraging First Words is a program offered by Alberta Health Services and Language Services. - Hanen is a speech and language program database. hanen.org - Qi Creative qicreative.com - The Ability Society abilitysociety.org

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- Kids First Communication Service Inc. kidsfirstcrew.edublogs.org - Khan Communication Solutions khancommunicationservices.com - Alberta Speech and Language Association of Private Practitioners asapp.ca •P rivate physiotherapy, occupational and speech Many therapists will do private therapy sessions. The therapists you meet in hospital or at the Glenrose can often lead you in the right direction for private services. • Constraint therapy Constraint therapy aims to improve the hand and arm use of children with hemiplegia. It involves physical constraint of the uninvolved or less affected arm to increase the use of the more involved or affected arm. Constraint therapy is done at the Glenrose Rehabilitation Hospital. For more information, visit canchild.ca/en/canchildresources/ constrainttherapy.asp. 97

• Physiotherapy, Occupational Therapy and Speech Therapy •

COMPLEMENTARY THERAPY

Before initiating therapy, consult your physician. • Anat Baniel method The Anat Baniel method is for children who have special needs. It is based on the understanding that many diseases and traumas of childhood interrupt the normal process of formation of the brain. Through movement and gentle touch this method aims to enhance your child’s awareness and create new connections in the brain. Contact the Edmonton ABM practitioner, Carla, at abm2011@telus.net, or visit anatbanielmethod.com. • Conductive education Conductive education is a rehabilitation program for people of all ages with disabilities such as cerebral palsy, Parkinson’s, multiple sclerosis, or those who have had a stroke or brain injury. Google “CE” for various locations in Canada.

• Cuevas Medek exercises CME is a physical therapy method for infants and children with motor issues caused by disorders affecting the central nervous system. Visit cuevasmedek.com. • Craniosacral therapy Craniosacral therapy is based on subtle movements that cause a response in cerebrospinal fluid (CSF) fluctuations within the spinal cord and brain environment. More information is available at cranialtherapy.ca. • Hyperbarics oxygen therapy For information on this, visit canadianhyperbarics.com. • Masgutova method Information about the Masgutova Neurosensorimotor Integration (MNRI) method is available at masgutovamethod.com.

DENTISTS WHO TREAT CHILDREN WITH SPECIAL NEEDS • Dr. Doug Bosko General Dentistry Blue Quill Shopping Centre 366 Saddleback Road Edmonton, AB (780) 437-4816 • Dr. Richard Caldwell Pediatric Specialist 1120 Weber Centre 5555 Calgary Trail South Edmonton, AB (780) 438-4718 • Dr. Mai Diab Pediatric Specialist 201W, 14310 – 111 Avenue Coronation Plaza, West Tower Edmonton, AB (780) 484-5667 • Dr. J. Evancusky Pediatric Specialist Children’s Dental Centre 210, 11808 St. Albert Trail Edmonton, AB (780) 425-5437

•D r. Bohdan Kuzyk Pediatric Specialist 845, First Edmonton Place 10065 Jasper Avenue Edmonton, AB (780) 428-7767 •D r. N.D. Preshing, Dr. Jerry Thomas & Dr. C. Martin-Neumeyer General Dentistry University of Alberta Dental Clinic, WMC-2C18440-112 Street Edmonton, AB (780) 407-6854 •D r. Alan Roth Pediatric Specialist 440, 4445 Calgary Trail South Edmonton, AB (780) 435 -2098 •D r. Salina Tromposch General Dentistry 330-664 Wye Road Sherwood Park, AB (780) 476-2401 Reference: Alberta Health Services. Pediatric Feeding & Swallowing Consultation Service, Pediatric dentist list - August 2008

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SECTION 4.2 – FUN Accessible sports and programs

Caroline Hamel

• Alberta Adaptabilities Association This association offers programs that are designed to enhance each individual’s recreation, motor skills, life skills and creative talents. Activities are adapted to help foster a positive experience and success. Learn more at adaptabilities.ca. • Alberta Northern Lights Wheelchair Basketball Society This is a program that teaches the skills and techniques of playing wheelchair basketball. This organization is world renowned for its athletes. Visit albertanorthernlights.com for more information. • Canadian Association for Disabled Skiing – Alberta These programs are aimed at instructing individuals with disabilities in the various adapted skiing techniques. You can read more about these programs at cadsalberta.ca.

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Caroline Hamel

This section is focused on the fact that, despite medical conditions or disabilities, children simply want to have fun, laugh and play. Throughout our province, a wide variety of programs, sports or outdoor adventures exist for the inclusion and accessibility of all children. We have listed some of the programs we found (there are many more out there) that have been created for children with accessibility requirements. There is nothing more enjoyable then watching children have fun and enjoy life. Take a few moments and see if some of the programs would be suitable for your child.

•F ree to Be Me Free to Be Me provides physical education and programming for kids and teens with disabilities. There are a variety of options available; find what works best for your child at steadwardcentre.ualberta.ca. •H orseback Riding Little Bits Therapeutic Riding Association is a non-profit, charitable organization that provides recreational horseback riding with therapeutic benefits for children and adults with disabilities. The waiting list can be fairly long at times; get your name on it early. Check out littlebits.ca for more information. • I-dance I-dance is a program that includes both disabled and non-disabled people who just love to dance! It uses integrated dance techniques to focus on the strengths of each individual dancer. •K inder Music Kinder Music offers music, art, drama and dance programs for children one and a half to seven years old. Go to kindermusik.com to learn more. •P aralympic Sports Association Spring programs include outdoor soccer, roller inter-cross, roller/sledge hockey and adaptive golf. Summer brings a variety of different day camps that are accessible for children and teenagers. These camps have different genres but include sports and dance. Fall and winter programming includes indoor soccer, teen and adult groups, sledge hockey, wheelchair square dancing and taekwondo. 99

• Accessible Sports and Programs •

• Wheelchair Sports Alberta Wheelchair Sports Alberta features basketball, sledge hockey, athletics, tennis and rugby programs. Go to abwheelchairsport.ca to learn more. • Wheelchair Curling You can find information on wheelchair curling at savillesportscentre.ca/curling.aspx?p=curling_home.

SAFETY NOTE:

Helmets are essential. Don’t forget that a helmet is not just for riding bicycles. Use them for activities such as sledding, ice-skating, and skateboarding. There is a lined helmet on the market that keeps ears and heads warm while providing protection during winter activities. Stores that carry these helmets include Canadian Tire and Costco.

Caroline Hamel

• Special Olympics Edmonton Special Olympics Edmonton is a non-profit, volunteer-based sports organization that provides recreational and competitive opportunities for individuals with disabilities. Learn more at specialolympicsedmonton.ca. •S portability – Alberta CP Sports Association Programs include bocce, soccer, cycling, athletics, and swimming. ccpsa.ca • SwimAbilities This community-based, levelled swimming program is geared for children with special needs from ages three to 16 who need additional support to achieve their beginning swimmer goals and to increase their safety, independence, and enjoyment in and around the water. Dive in at swimabilities.ca!

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• Accessible Sports and Programs •

FUNDING FOR SPORTS

In addition to applying for assistance from charities or associations, the following two agencies are focused on helping children involved in sports by assisting with financial costs. • KidSport helps families with financial barriers. Visit their website at kidsport.ab.ca or call

BIKE RIDING PROGRAM

• You Can Ride Two The Edmonton Bicycle Commuters Society, along with a number of other partnering organizations, helps sponsor two cycling initiatives for children with disabilities. You Can Ride Two is a free, community-run program that aims to get children riding a two-wheeled bicycle. Children must be able to pedal, steer and stop an adapted bicycle and have a referral from a physiotherapist, occupational therapist or an adapted physical education consultant. Please visit youcanridetwo.ca. • You Can Bike Too You Can Bike Too is an adapted-bicycle loan pool that lends out modified or specialty bicycles to children with a variety of special needs. Parents pay a deposit which is later refunded (minus any repair costs) when the bicycle is returned. Loan periods range from two days to one year. For more information on either program, please visit edmontonbikes.ca and look under Services for Youth and Adaptive Programs.

If you are looking to buy an adapted bicycle there are numerous online options. In Spruce Grove, there is

SPECIAL EDMONTON SUMMER EVENTS

• Dream Night at the Zoo This event is usually held on the first Friday in June and is free to families with children who are chronically ill or have disabilities.

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1-888-914-KIDS (5437) for details. • Jumpstart helps cover the cost of equipment, registration and/or transportation to help children be involved in sports. Visit jumpstart.canadiantire.ca or call 1-877-616-6600.

a company called Specialty Designs that customizes bicycles, trailers and equipment to meet the needs of the child. Check it out at specialtydesigns.ca. There are a variety of bike trailers available online. Here is one that we really like:

These great bike trailers can be found at rideweehoo.com.

•M onday Morning Magic – K-Days This is a free morning to enjoy the K-Days Exhibition experience for families of chronically ill or disabled children over the age of three. Register early, as it fills quickly.

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Camp and adventure trips

•C amp Everest Any child seven to 17 years of age who has undergone brain or spinal cord surgery at the Stollery Children’s Hospital can attend Camp Everest. Registration priority is given to campers who do not have a summer camp alternative. A summer camp alternative is one that is either able to meet the camper’s medical needs or provides them with an environment in which they can interact with children of a similar diagnosis. neurosurgerykids.com • Lil’ Everest Kids up to six years old who have had brain or spinal surgery, their siblings and families are welcome to a one-day camp experience filled with fun and laughter. neurosurgerykids.com • Camp He Ho Ha Camp He Ho Ha provides recreational opportunities not only for children with disabilities but also for adults of all ages with every type and degree of disabilities. camphehoha.com 102

• Camp Freedom This four-day overnight camp is for teens aged 12 – 18 years old with spina bifida. For information, call the Spina Bifida & Hydrocephalus Association of Northern Alberta at (780) 451-6921. sbhana.org • Camp Beat It (Family Camp) This is a Kids with Cancer Camp that is held for four days each September long weekend at Camp He Ho Ha and provides an indoor camping experience for families who are at various stages of the disease and survivorship. • Camp Kindle The Kids with Cancer Camp provides funding for all Northern Alberta children with cancer and their siblings to attend Camp Kindle. This weeklong program, delivered by the Kids Cancer Care Foundation, is open for children age six to 17 over the summer months. • CPAA Vacation Villa - Vacation Without Limits This program, run by CP Association of Alberta, offers a fully accessible vacation home located in Raymond Shores resort by Gull Lake. It is available to members and non-members alike. Call toll free 1-800-363-2807 or (403) 543-1161 for information.

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• Camp and Adventure Trips •

•E aster Seals Camp (Horizon) Horizon has a residential camping program for children with diabetes, kidney impairments, ostomies, burn survivors and their siblings. They specialize in outdoor and adventure-based programs for youth and adults with special needs, including serious illness, developmental and physical disabilities. easterseals.ab.ca • Hearts in Action Camps Hearts in Action Camps is a summer day camp for children, youth and young adults. Hearts in Action also has year round camps. adaptabilities.ca • Our Lady of Queen Peace Ranch This ranch is a recreational facility designed to provide a FREE outdoor experience for children with life challenges. It is a non-profit organization that works directly with youth, families and various agencies who work with physically, mentally, financially and/or emotionally challenged people, while providing a fun opportunity to experience the natural outdoor environment. They offer day trips, weekend family teepee rentals and much more. There are two locations. ourladyqueenofpeaceranch.com • Robin Hood Association The Robin Hood Association hosts many group programs and summer camps for children two and a half years old and older. robinhoodassoc.com

• Rocky Mountain Adaptive Sports Centre This organization is near the mountains and offers accessible fun for families and individuals, including kayaking. •W illiam Watson Lodge This lodge is situated in Peter Loughhead Park, Kananaskis Country. It provides year-round accommodations for Albertans with disabilities. They have wheelchair accessible cottages and wheelchair accessible trails. For reservations, phone (403) 591-7227. TRAVEL AT A DISCOUNTED RATE: Disability Travel Cards: Disability Travel Cards provide identification to adult attendants to travel with people that have permanent disabilities at no cost on participating Canadian coach operators or ViaRail. The person with a disability that is being accompanied by an adult attendant then travels at a reduced fare. Easter Seals Canada and its members and/or affiliates are authorized to approve reduced fare tickets. Visit easterseals.ab.ca/site/OurPrograms/ DisabilityTravelCards.aspx for more information.

TIP: When travelling to Disneyland, Disney World, Universal Studios or Legoland, take a few moments to stop at the customer relations area. These parks have passes for people with disabilities to help make their stay a more pleasant one. If walking for long distances is a challenge, you can also have your stroller tagged by customer relations to be used like a wheelchair.

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• Camp and Adventure Trips •

TRAVEL INSURANCE

Travelling with children who have a medical condition is not as easy as it looks. Here are some suggestions from Pamela Murray, a specialist in medical and travel insurance, to help guide you in finding and getting insurance. To obtain travel insurance, people are often told that if your medical child has had no change in 90 days prior to travel that you they are eligible for coverage. When looking in to coverage and your child has had no medical change for three months, LOOK DEEPER. There are exclusions to every policy that may contradict the 90-day rule. This all depends on your child’s condition. When you talk to an insurance agent about travel insurance, make sure you start by telling the agent that your situation is complex and you would like to speak to a manager or a highly experienced agent. Be 100 per cent honest with them – tell them the entire situation about the medical condition and future prognosis. If you do not help the agent understand the medical situation, they may sell you a policy for which you are not actually covered. A lot of insurance companies have a staff doctor that they can talk to and understand your situation.

Talk to a manager or highly experienced agent every time you travel as company polices change all the time. All companies view and interpret medical policies differently, so make sure you understand the terms and conditions. You will also want to ask the insurance company about the pre-existing stability clause on their policy. There are companies out there that will provide shortterm travel polices at a higher premium. To find out what those companies are, you can search “travel insurance for pre-existing conditions.” Again, disclose all of your child’s medical information so they can provide you with the right coverage. Depending on your child’s condition, you may also want to consider travelling within Canada. There is no coverage under a traditional “travel policy”; you would have to investigate with an insurance broker for specific coverage for this. It is rare and expensive. There are all kinds of travel insurance and depending on your child’s condition, a standard travel plan available through travel agencies will be applicable. For the more complex situations, check directly with a broker or insurance company. Google “travel insurance” and you will find a great deal of information.

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SECTION 4.3 – SPECIALIZED PRODUCTS Clothing, shoes and specialized products It is often difficult to find footwear for children that will offer rigid support or have the ability to go over anklefoot orthotics (AFOs). We have listed a few options. It is a good idea to speak with your physiotherapist or orthotist about footwear options for your child. Everyone has different feet and different support requirements. • Orthotic shop This website was recommended by an orthotist at the Glenrose and it has a variety of shoes and boots available that are made specifically for AFOs. There is a handy measuring guide you can print off to ensure accurate sizing. Go to orthoticshop.com/ manufacturers.php for more information.

your physiotherapist or orthotist about whether this shoe is a good match for your child.

TIP: If you haven’t already, ask your FSCD worker to have shoes and clothing put on your contract.

• Hatch Backs These shoes literally open up. Slide the foot in and do the strap up. Go to hatchbacksfootwear.com to see more.

• MEC Boots The MEC Toaster Booties cost only $27 and they go over AFOs easily. Although they don’t offer the support a rigid shoe does, they can be used to keep little feet warm during a stroller ride or if the child is in a wheelchair. Mountain Equipment Co-Op in Edmonton has many different colours and sizes.

• Stonz Stonz boots are a lightweight boot that is good to -40 C with the insert and -20 C without. Use the double toggle to tighten boots. Stonz boots are made in Canada.

• Pedro Shoe If your child requires a rigid shoe, check out Pedro Shoes. There are loads of styles and different amounts of support. You may want to have a conversation with The Compass

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• Clothing, shoes and specialized products •

MOM TIPS

• A mom of a young girl who loved wearing higher style boots, like cowboy boots, was unable to find a pair that was made to go over AFOs. She ended up taking her daughter’s boots to a shoemaker and had him cut the back and insert a zipper so that her daughter could slide her foot in. Brilliant! We love this trick and can’t wait to try it out. • You can also find a variety of shoes at regular stores that would work. You should look for ones that tend to be a bit wider to have room to slide the AFO and foot in easily. You may have to go up one size and try taking the insole out, if possible. Have the AFOs with you to try them out before making your purchase. • Special AFO socks can be very pricey to purchase. Some stores such as Children’s Place have thin cotton socks with grips on the bottom that can be pulled up high to fit the height of the AFO. • You can often get three pairs for $10.

• Another mom suggested the use of something like a cleat skin to cover over your child’s running shoe if it is dirty and muddy out to help protect your AFO footwear. Go to cleatskins.com for ideas.

THIS AND THAT

• Glasses Miraflex offers top-quality frames. They are designed with the child in mind, whether a few months old or an adolescent. Miraflex has over 20 years of experience with children’s eyewear and offers the largest range of children’s frames designed by experts to satisfy the more demanding professionals’ requirements. These glasses are hinge free and metal free.

•W alking helmets Protecting children from falls when walking or from injury during sports is very important. This site offers a variety of helmets, even ones that can be customized for children with large or very small heads, at kidsafetyhats.com.

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• Nammu Swimming Hats Water hats made for children with hearing aids, implants or tubes. nammuhats.com

• Silka Wear Bonnets These are hats for children with hearing aids or cochlear implants. silkawear.com

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• Clothing, shoes and specialized products •

• Clothing This site offers easy access clothing for all age groups. easyaccessclothing.com • Koolway Sports Koolway Sports designs outerwear for people in motion while enabling them to achieve their maximum level of independence in all aspects of life. koolwaysports.com

eekaroo or Special tomato •K Finding a chair that provides support and durability can be a difficult task. This chair is amazing! We love it. There are many makes and models of this chair. It comes with the tray if you’re using it as a highchair. Both foot rest and seat board can be adjusted. The cushions come in a variety of colors and are washable. They also have a seat cushion that is flat for older children, and footrests are an option.

• Special Needs Life Jackets pfd-a.com • Walking Canes This site ships to Canada and sells all types of walking aids from Forearm Crutches to Quad/Tripod Canes and accessories. walkeasy.com TIP: If you get a referral from an occupational therapist you can apply to an association or charity to help with the cost of some of these specialty items.

• Pediatric Single Cane wayfair.com

TIP: Some Superstore locations sell a range of pediatric canes.

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• Clothing, shoes and specialized products •

JACK-OF-ALL-TRADES

Let’s be honest – a parent is not only mommy or daddy. We wear many hats, especially when our children have medical issues or disabilities. One of those many hats is that of the inventor. Below are a few adaptive ideas from crafty parents. • Stairs, parallel bars and ladders Specialty equipment is very expensive, but if you have a reliable handyman, it is possible to have equipment built for your home at a reasonable price. Here are a few items that we have had made.

• Bikes Biking is a great activity that helps children strengthen their legs with pedaling and their arms with steering, and it can promote independence. This trike was purchased at Toys “R” Us and an uncle and shoemaker made the foot pedals. Biking at the mall in winter can keep your child active.

One family adapted the bike on a treadmill for their son. He is a mild paraplegic, so the treadmill set on very low helps with initiation of the pedaling motion. This is an idea, but it is essential that mounting is secure and your child is always monitored. • Online and catalogue equipment resources - Flaghouse: flaghouse.com - Abilitations: abilitations.com - Special Needs Toys: specialneedstoys.com/can - Adaptive Mall: adaptivemall.com - Sensory Edge: sensoryedge.com - E-Special Needs: especialneeds.com

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CHAPTER 5:

Stories of Coping

Illustration by ROBERT CARTER

Chapter 5: Stories of Coping 113

SECTION 5.1: GRIEVING • The five stages of grief • Resources

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SECTION 5.2: REAL-LIFE STORIES • Stories from parents • Sibling support information and stories from siblings • Stories from family and friends • Stories of bereavement

CHAPTER 5:

Stories of Coping Most parents agree that having children is one of the most rewarding and amazing life experiences. Your heart feels like it literally doubles in size. When you receive the devastating news that your child has medical issues or disabilities, the emotions you feel can be overwhelming and difficult to deal with. Everyone travels a different emotional path and will find different interventions helpful in coping. It is important to be aware of some of the emotions you might experience and be aware of some of the warning signs that you might need to seek professional assistance. There are five stages in the cycle of grieving. We chose to include this because we found that each of us had one way or another travelled through the stages. It is important to read it be aware that you may go through this.

SECTION 5.1: GRIEVING Five stages of grief ➊ DENIAL I can’t believe this is happening to me.

Robert Carter

“If you are experiencing any of these emotions, it may help to know that your reaction is natural and that you’ll heal in time. However, not everyone who is grieving goes through all of these stages, and that’s OK. Contrary to popular belief, you do not have to go through each stage in order to heal. In fact, some people resolve their grief without going through any of these stages. And if you do go through these stages of grief, you probably won’t experience them in a neat, sequential order, so don’t worry about what you ‘should’ be feeling or which stage you’re supposed to be in. Grief can be a roller coaster instead of a series of stages; we might also think of the grieving process as a roller coaster, full of ups and downs, highs and lows. Like many roller coasters, the ride tends to be rougher in the beginning and the lows may be deeper and longer. The difficult periods should become less intense and shorter as time goes by but it takes time to work through a loss.” -Hospice Foundation of America

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• Five Stages of Grief •

➌ BARGAINING Make this not happen, and in return I will ________.

➍ DEPRESSION I’m too sad to do anything.

➎ ACCEPTANCE I’m at peace with what happened.

Robert Carter

➋ ANGER Why is this happening? Who is to blame?

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• Five Stages of Grief •

RESOURCES

Hints for caring for yourself We have compiled some suggestions from parents that might be helpful during this stressful time. • Reach out to friends and family. Friends and family care about you and want to support you during a difficult time. Often others want to help but don’t know how, so tell them what you need. If you find it difficult to verbally tell them use email, text or Facebook. We have also included a friend and family section that you may want to share. • Attend a support group. You can feel very lonely, even when you have loved ones around. Meeting with other people who have shared similar experiences can be very good for your mental health and well-being. Visit neurosurgerykidsfund.com often and watch for events we hold for families, moms’ groups and siblings. Search for other support groups in your neighbourhood or social circle. • Take care of yourself. Combat stress and fatigue by getting enough rest, eating well and exercising. Even taking a short walk each day might help. Finding relaxation techniques such as deep breathing or meditation might be helpful. • Talk to a therapist or counsellor. If you find it is very difficult to deal with your emotions regarding your loved one’s medical challenges or death then seek professional help. You may need to try a few therapists before you find the right one, but when you do they can be a tremendous resource for dealing with emotions. Many companies have coverage for these services, so inquire with your provider.

RESPITE CARE

If you are a primary caregiver, you may need a break. Respite care provides temporary care for your loved one. There are a variety of agencies that provide respite services, including: • Adaptabilities – centre-based respite adaptabilities.ca • Postnatal Care – in-home service for all ages • Skills – centre-based respite skillsedm.com • Transitions – St. Albert and area transitions-ab.org • Robin Hood Association – in-home service robinhoodassoc.com • YWCA ywcaofedmonton.ca • GRIT gritprogram.com The Compass

Here are a few counselling resources in Edmonton. • CASA is a major community-focused provider of mental health services for infants, children, adolescents and their families, located in Edmonton and serving central and northern Alberta. casaservices.org • Catholic Social Services (780) 420-1970 catholicsocialservices.ab.ca • City of Edmonton Community Services (780) 496-4777 edmonton.ca • Cornerstone Counselling Centre (780) 482-6215 cornerstonecounselling.com • The Counselling Centre (780) 478-0065 • Hope Foundation of Alberta (780) 492-1222 ualberta.ca/hope • The Family Centre (780) 424-5580 the-family-centre.com • Jewish Family Services (780) 454-1194 jfse.org • McMan Counselling (780) 482-4461 mcman.ca • Pastoral Counselling Group (780) 482-4461 pastcoun.com

Another option for respite care workers would be posting an ad at places such as local churches, the University of Alberta job board, Grant MacEwan (childcare programs), local schools, a local paper, or asking friends and family for a referral.

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SECTION 5.2 – REAL-LIFE STORIES OF COPING One of the major driving forces for this book was that each of us parents remembered an overwhelming sense of fear during our child’s medical journey, and the feeling that we were alone. It felt like no one could possibly understand the anguish we felt or that no one had been through this before. In fact, this road has been travelled. This section is a personal compilation of stories of remarkable children, parents, friends, family and health care workers who have walked on the difficult path before you. Let these stories be a reminder to you that you are not alone.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...... When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.” “Holland ?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence,

famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. SOURCE: © 1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author

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Stories from parents MY HERO – MY SON by Melissa Da Silva

Joshua spends every moment of his life inspiring others with his determination and desire to achieve. His beautiful little smile can simply melt your heart. August 4, 2010: Joshua’s birthday was one of the happiest and most heartbreaking days of my life. I remember it like it was just yesterday. I can picture every detail and feel those exact emotions. I was 36 weeks pregnant and after an unremarkable day, I had an overwhelming feeling that I needed to go to the hospital. Maybe it was faith; some call it mother’s intuition. A relatively normal assessment quickly changed with the onset of a single contraction. In this very moment, my baby became extremely distressed and despite countless interventions he was not responding. Fearful and afraid, the nurses immediately called a Code Pink – an obstetrical emergency. The life of a mother and child hung in the balance. My son was born by emergency cesarean section and in the early moments of his new life he was fighting against death. My beautiful six-pound baby boy was fighting a medical battle of astronomical proportions. Joshua had a life threatening condition called disseminated intravascular coagulopathy (DIC) that caused his blood to become extremely thin and made him very sick. It is believed that at the time of that single contraction, Joshua began bleeding in his brain, suffering a hemorrhagic stroke. This was the darkest time in my life. I remember sitting next to my son’s bassinet in the middle of a busy, loud NICU filled with nurses, doctors, families and friends; I felt so alone. I was scared and lost. I was bargaining with God and I was angry and heartbroken. After 19 long days in the intensive care, my baby boy Joshua made it home. He fought hard, and with the love of his family and the knowledge and skills of the Stollery ICU staff, he survived. We finally went home, and we were together like a family should be. My husband and I were committed to providing our children with unconditional love and support, despite our fears of the many unknowns for Joshua. We didn’t know if our precious baby was blind or deaf; we didn’t know if he would ever walk; we didn’t know if he would ever talk. Would we ever hear

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“mommy” and “daddy” spoken from his lips? Only time would tell. Just when we felt like we were getting into a routine, our sweet boy became seriously ill with a respiratory virus and he struggled to breathe. He was so weak he barely had the strength to hold his head up. Joshua spent over two weeks in the Stollery once again. It was during this hospitalization and a random elevator ride that I first encountered a member of the pediatric neurosurgery team, Dr. Pugh. Tired and crying I bombarded him with questions about stroke complications, stroke recovery and surgery. Having never met my son he still spent time with me and shared his knowledge. Genuine and kind, his exact words to me before we went our separate ways were, “If you need us, we will be here.”

We didn’t know if our precious baby was blind or deaf; we didn’t know if he would ever walk; we didn’t know if he would ever talk. Would we ever hear “mommy” and “daddy” spoken from his lips? Only time would tell. Seven months later, Joshua would in fact require the help of the neurosurgical team. He required brain surgery for a VP shunt at 14 months old. His head was rapidly growing and the only remedy was surgery. Dr. Pugh and Wendy Beaudoin took us by our hands and with compassion and knowledge led us down this very difficult path. Answering our every question, never rushing an appointment, and having genuine care for our family made it easier to hand him over to them in the operating room on September 20, 2011. Now at three years old Joshua continues to amaze us with his drive and motivation. He has undergone countless procedures, surgeries, scans and appointments that are reflected in the hundreds of Hope Stones he has collected already. The hope stones are a symbol of a difficult medical journey, but they are even more a symbol of what we have overcome as a family. Joshua has accomplished so much in his short life and we are so tremendously proud of him, and we are in love with him and his brother.

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• Stories from Parents •

SISTERS by Melody Willier

My husband and I are blessed with two amazing girls. Like all new parents, we were thrilled when we found out we were expecting our first daughter. Addelyn joined our family in 2009, and she was beautiful. At birth, she inhaled meconium and was taken away from me with breathing problems. She was transferred to a different hospital than the one in which we delivered. I remember being heart-broken and feeling helpless; I only got to hold her for a few seconds before she was transferred. Her dad was right by her side the entire time, already showing us how great of a father he would be. We spent six days in the hospital as she learned to breathe and eat on her own. We took our baby girl home and began our journey as a family, expecting that our trauma was over. It wasn’t until she became ill at seven months with a respiratory infection that the doctors began to raise concern about her development and low muscle tone. It was at this moment that we realized our lives will be changed forever. Blood work, tests, physiotherapy, and treatment programs were now going to be a daily part of our lives. Addelyn is now an active and bright four-yearold. She has started to walk this year and continues to show us that she is not stopping but moving forward. We are so proud, and we admire her strength. Optimistic and hopeful, we decided to have another child. We were reassured from the doctors that it was less than a one-per-cent chance our next child would have any medical issues. In July of 2011, our baby girl was born five weeks early at three pounds, 11 ounces. We spent 33 days in the NICU where they discovered she had two holes in her heart. After 10 months, the medical team decided that one of the holes in her heart needed to be repaired because she was not growing

or developing. In May of 2012, Claire had open-heart surgery. In the summer of 2013 she had an MRI, which showed that she has a tethered spine and severe scoliosis. This is the point that we officially became part of the neurosurgery family. Claire is being watched and monitored and will need multiple surgeries – including spine surgery – in her future. We know we have struggles and a lot of work ahead of us but she is our angel and we will do whatever it takes to make sure she is moving forward. She shows us every day that she is determined, hardworking and stubborn. Both girls had genetic tests done and they both have a rare chromosome imbalance. We do not have a true diagnosis and are unsure of what the future holds for them. We are certain, however, that we love them unconditionally. With the help of therapies and specialists we are certain we will be sending our girls in the right direction to succeed. As a parent of undiagnosed children, it is hard to move forward not having any answers and it is challenging to know where you belong or what direction to go. Trust that your child will show you and lead you in the direction you need to go. You will be surprised at the obstacles you will face and you will always find the strength to keep going. Always trust your gut as it will never lead you astray; there may be times when you have to disagree with a situation, but know that it is OK to stand up for what you believe in, and get educated on the decision you must face. People say to me all the time, “I could never do what you do.” I always look at them and say, “Yes you could, it’s that simple. Yes you could, yes you would and yes you can!” My children are my heroes and inspiration.

OLIVIA’S JOURNEY by Wendy Beaudoin

Dec 30, 2013 My name is Wendy, and I am the nurse practitioner for pediatric neurosurgery at the Stollery Children’s Hospital and a co-founder of the Neurosurgery Kids Fund. More importantly I am the mother of Olivia, my 10-year-old daughter who has had 29 surgeries, most of them on her brain or spine. On January 7th she will undergo her 30th surgery. In talking to my good friend Melissa, a mother of a neurosurgical patient, we thought this section might be helpful in many ways. For some of you, it may provide comfort to know others are struggling, thinking or feeling things that you may have thought but were afraid to say out loud. For others, it may be your first insight into the daily struggles of having a chronically ill child. Whereever you are in your journey or whatever your relationship is with the Neurosurgery Kids Fund, I hope you find this blog informative as we travel together through the next few weeks. 118

See page 153, where we have included excerpts from Wendy’s blog as she travels through Olivia’s medical journey. This blog is especially powerful because it is written with the utmost honesty about family, friendship, mental health, fear, gratitude, unconditional love and hope. Also find the blog at facebook.com/neurosurgerykids

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• Stories from Parents •

COURAGEOUS COHEN by Tammy Samoil

I am the proud mother of three boys. Cohen is our youngest son. On August 20, 2012 he was admitted to the Stollery Children’s Hospital emergency with a high fever, vomiting, severe lethargy and two different types of rashes. We thought he had the symptoms of meningitis, but it was a severe blood infection. By the late evening of August 22, Cohen was admitted to the Pediatric Intensive Care unit. The doctors told us that Cohen had suffered eight to 10 strokes, the infection was attacking his heart and an infected growth was damaging the valve in his heart. On August 23, 2012 our little Cohen had open heart bypass surgery. It was a tremendous success. The surgical team was able to take off the growth, but they needed to replace one of Cohen’s heart valves as it was severely damaged by the bacteria. He will require at least two more heart surgeries as he continues to grow to replace the valve. As Cohen started his recovery in the cardiac section of the PICU, he seemed to be improving. He was still on many IV antibiotics and drugs, but he had started speaking again and had about eight to 10 words before he was moved to the regular ward. I’ll never forget the night of September 7, 2012. The Rapid Response Team took Cohen back to the intensive care. An aneurysm, unruptured, was making the pressure in Cohen’s brain mount and placing him in grave danger. Cohen had a tube inserted into his brain to drain this fluid and relieve the pressure. He also suffered seizures. Soon after, doctors sent Cohen in for an angiogram and inserted glue into his head to hold the aneurysm in place to prevent further brain damage. The aneurysm burst under the pressure of the glue, but the glue held the clot in place. Just as we seemed to have brought this under control, Cohen then developed vasculitis and was put on high doses of steroids. This seemed to have cleared up so Cohen was taken again for another angiogram to get a better look at his vessels and arteries. We never thought

JACOB by Soula Milonas

Jacob has fought for survival from the moment he entered this world. Born extremely premature and weighing only one and a half pounds, he was very vulnerable and frail. At only 12 days old, tiny beautiful Jacob contracted meningitis making him fight even harder to stay alive. Just a few days shy of being one month old, Jacob was taken to the operating room and Dr. Aronyk inserted a shunt to help relieve the pressure from the CSF fluid filling in his brain. Little did we know this was only the beginning of our long medical roller coaster ride. After six months in hospital Jacob was ready to finally go home. He lasted four days at home and ended up with an infection that spiraled into eight more months in the hospital and many more surgeries. The Compass

he’d have an allergic reaction to the angiogram dye, especially since he’d already been exposed to this only a week before. Cohen had an anaphylactic reaction. His run of very bad luck never seemed to end and he couldn’t catch a break. Throughout this second stay in PICU, we still weren’t sure how Cohen’s vision was affected and what exactly he could see. We knew his right side was severely affected by his first set of strokes and now the left side of his body was severely impaired from the aneurysm. If that wasn’t enough, we were extremely worried as Cohen hadn’t said a word or acknowledged any sort of understanding for weeks after the aneurysm. During this time Cohen still required the tube in his head to help drain the fluid, our options were fairly limited and it looked like Cohen would need a shunt. So, after many conversations with our neurosurgeons, we tried a third ventriculostomy surgery. Although initially his pressures looked like they were dropping, Cohen ultimately still had to have another surgery for the VP shunt placement.

Cohen is very motivated, stubborn and determined: all amazing qualities to have for someone who recently became very ill, recovered and is now on a new journey of rehabilitation. On November 4, 2012, Cohen was discharged from the Stollery after 77 days, 55 of which were in PICU. Cohen is truly our miracle child. Our ultimate goal for him is to be able to walk again and I know some day that will happen, just not for a while. But for now, he is a happy child learning to move again on his own terms and in his own ways. Cohen is very motivated, stubborn and determined: all amazing qualities to have for someone who recently became very ill, recovered and is now on a new journey of rehabilitation.

Jacob’s battle continues to this day. He has cerebral palsy, svc (blood clot syndrome), seizures, stomach cysts, irregular heart rate, and blood pressure issues and is on multiple medications. Jacob has had 92 operations and over 300 procedures/scans in his short 13 years. He has been on life support and we have come close to losing him many times. Although the journey has been hard, sad, and scary, it has also been amazing, beautiful and life-changing. Jacob’s strength and fight for life is unreal. I thank the Stollery Children’s Hospital, pediatric intensive care, the neurosurgical team (Wendy, Dr. Mehta, Dr. Pugh and Dr. Aronyk), unit 4D staff and everyone else who holds the hospital together. My Jacob is still here and I am so grateful! 119

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God only knows how much longer I will have with this amazing little hero, and I take in each second of everyday and hold on to every smile, laugh and memory as tight as I can. Even though it’s been so hard, I feel so lucky to be his mom and be part of his journey along with all the amazing family and friends that are right here every step of the way. Every day we wake up we have a choice: we can be angry, frustrated and unhappy or we can live like Jacob and be happy and grateful, taking on whatever life throws our way. We make every smile count and share love, hope and strength with all those around us! Jacob is a true superhero, he is my world and he has taught me more than I could ever teach him. I’m the luckiest mom in the world to call him my son! After his 90th (yes, 90th) surgery, Jacob meets the warm and tender touch of his beautiful mother, Soula. It truly is amazing how love can emanate from a photo.

MY NEUROSURGICAL JOURNEY by Ashley Mullins My medical story began when I was 14 months old. I was born with a cavernous malformation. One day my mom had noticed I was dragging my right leg and couldn’t use my right arm properly. I was having a hard time keeping food down. My mom decided it was best to take me in to see a doctor. So I went and had an MRI. We got the results – I had a brain hemorrhage. I had a 12-hour surgery, with Dr. Aronyk as my surgeon. My chance of surviving was less than 25 per cent. I made a full recovery but had MRI scans on a regular basis. I grew up healthy, active and happy playing sports and doing hip hop dancing. When I was 12 years old, I was doing my first photo shoot ever as I was interested in modelling. I remember I was having a hard time holding myself up, getting very clumsy with my whole right side. I also had a fall at school one day and knew something just wasn’t right. So my mom took me in to see the doctor and to get an MRI. I had hemorrhaged again. It was a 12-hour surgery. I remember all my family and friends were so worried and crying as I was going in to the OR. I was scared but I knew in my heart that it would be OK in the end. The doctors had told my family that they were expecting me to be in a coma for up to four months. I actually woke up on the operating table as they were bandaging my head up. Everyone in the OR was clapping and cheering and I knew exactly where I was! After my surgery I was in the University hospital for about three weeks before I got transferred to the Glenrose Rehabilitation Hospital. I had to relearn how to walk and talk. I was in occupational therapy, physiotherapy and speech therapy. I had to re-train my whole right side of my body and my mouth to work again. The simplest things would be so hard for me, like picking up a pencil or just sliding a cloth across

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the table. There were days when I just wanted to give up completely. But I got through each day knowing my friends and family were always there for me. My rehabilitation continued for about eight months and I was almost ready to go back to school full-time until we realized I wasn’t feeling myself yet again. I went in for another MRI and the results had shown another hemorrhage. This time I was sent to Calgary because they had an MRI machine in the operating room. My friends, family and even Dr. Aronyk and Wendy Beaudoin from Edmonton came to be in the OR. That made me feel so much more at ease with the 14-hour surgery I was about to have. They told me and my family that because the surgery had to be so aggressive to cure me that the chances of not walking again were very high. At that moment my heart just sank. All the memories I had of me running and playing sports just flashed in my head. I then realized that my life would never be the same. What I once knew could be gone forever. With having more challenges than I ever thought possible each day was a struggle beyond my wildest imagination. My doctors, my family and my friends were by my side every moment. Together, we got through each day. I fought as hard as I could. With strength, hope, courage, love and faith I’ve made it through. To this day I still work on my walking and I love to do volunteer work and fundraising for sick children. I work for the Stollery Children’s Hospital for my doctor and nurse and look forward to my future and helping sick children in any way I can. I am so blessed to have the life I do. Is my life a struggle? Yes. But that doesn’t stop me from doing the things I love! I can do basically everything, just in a different way.

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MY BOY by Deanna Schultz

Caleb swims, rides horses, zip lines, camps, sings, skates and plays hockey, goes to concerts, plays video games and the computer and enjoys anything and everything fun. He has a wonderful sense of humour and wit, is confident and aspires to be a puppeteer or actor one day. He is also a teenager who is in Grade 7 and is sassy and a little moody at times. Overall, he is just an average kid who enjoys his life. Caleb was born at 27 weeks weighing one pound 13 ounces, and he was 12 inches in length. This is the same as two bricks of butter and an unsharpened pencil. Because of the prematurity, Caleb has been diagnosed with moderate spastic quadriplegia (affecting all four limbs) cerebral palsy or severe spastic diplegia (both legs) cerebral palsy. It is a very trying time when you first receive a diagnosis. Your worries can consume you and it is very overwhelming. What I can tell you is that it gets easier and you can adapt. For me, the first couple years were the hardest. Not only was Caleb’s body premature but his immune system as well. We spent 19 months of the first three years in and out of the hospital with respiratory issues, aspiration and reflux and finally

LITTLE D by Lindsay*

We tried for months to find out what was wrong with our son. His weight dropped, he stopped meeting milestones and he continued to regress and deteriorate to the point where he looked like he did not even want to go on anymore. We stressed and searched and finally 10 months later, after numerous tests and procedures, an MRI finally gave us our answer. “Your son has a tumour in his spinal cord. The tumour is very large; it starts at the top of the spine and goes approximately halfway down his back. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now?” “OK” is the only word that escapes my mouth. Everyone leaves the room; we both sit there and stare straight ahead, we stare at each other, we stare at our son and then we cry. My ears are ringing and I have one of the worst migraines ever. I feel very alone. My marriage has been unravelling from the previous months of stress; I am 27 and pregnant with our third child, who is due to arrive in less than a month from this exact day. The next 10 minutes are full of crying and a few short sentences. Oddly enough I feel relief. We finally have an answer and they are going to fix our son. The next 10 days somehow fly by yet still feel like an eternity. We don’t talk about the surgery; we enjoy every minute we have together. Tomorrow morning is the big day. My nerves are starting to rattle and I am feeling more anxious as I listen to the clock on the wall tick away. I don’t sleep at all; I sit in a rocking chair holding The Compass

having a G-tube inserted to help him with his feeding and swallowing. This was not including all the regular appointments for cardiac echoes, MRIs, x-rays and numerous other tests. Life was pretty exhausting during that time. Once we were out of the medical crisis, things calmed down. Caleb learned to sit up at three years of age, walked with a walker at four, outgrew his G-tube at five, and has kept progressing ever since. There have been some other medical interventions such as botox for spasticity and orthopedic surgery but he continues to progress and be stronger every day. This year he was able to stand up on his own without any assistance. I am proud of my son every day for the things he has accomplished and for what he strives to do. He is in a wheelchair but has never let his disability define him. He has spoken in front of hundreds of people, young and old, in regards to how his disability affects him. His motto in life is “It’s not how you do it. It’s that you are doing it.” He never says he can’t. He says “I can – just differently.” He has changed my life and inspired me to do better, be better and try harder. It is because of him that I am who I am today.

our son as tight as I can. I just stare at him and pray. At seven in the morning – all too soon – they come for us. During the surgery minutes in each hour feel like an eternity. We receive word halfway through the surgery that everything is going wonderfully, as well as can be expected. I continue to pray. We are finally able to see our son in PICU nine hours later. We are warned what to expect: tubes, machines, equipment. I am not shocked by any of it, I am just so thankful I can finally see him again. The first few nights are awful. The worst part as a mother is not being able to pick him up and hold him. I feel completely helpless and beat down.

Your son has a tumour in his spinal cord. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now? As the days go on he continues to get better and he is able to move from PICU up to the unit. Three weeks later we are finally home. Life is so busy, appointments are the new normal, rehab is just part of our daily routine, and we spend a lot of time in the car. After nine months of gruelling rehabilitation our son is walking, pushing a walker. It is truly amazing. A follow-up MRI shows the tumour is growing back and we learn that at the age of 18 months our son is 121

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going to have surgery again. It feels way worse than it did the first time. I am scared, but mostly I am angry. I am so angry that my son has to endure this situation not once, but twice. The surgery is another very long surgery, and just as hard on everyone as the previous one. There are more complications during the surgery than the first time, and we have more to deal with after the fact. I am relieved the surgery is behind us and we can move forward to the next step: rehabilitation. Our son will walk again, I am very confident of this. We are told that because of all of the complications during the surgery, he is no longer a candidate for more surgery and if the tumours come back our only option is radiation. Two months later my heart is ripped out of my chest for a third time. I know without a doubt that the tumours are growing back. It is confirmed in our clinic

LAUCHLIN by Kaela Hendra

Lauchlin was born at 25 weeks and six days to his parents surprise, weighing in at one pound, 15 ounces. This meant he would stay in the NICU for three and a half months and have lots of tests for all of his little organs. Our initial round of tests discovered early on that he had what the doctors described as a “bleed in his brain,” but the hope was that it would clear up without surgical intervention. The neonatologists watched it closely with on going head ultrasounds and

We were just praying for a healthy baby, whatever that meant at this point. There were a lot of tears and moments of “why us?” But we couldn’t get stuck there. measurements. It wasn’t clearing up; we would need to have close follow-up after release from the NICU. We were so overwhelmed by everything going on in his little body. We were just praying for a healthy baby, whatever that meant at this point. Getting answers was next to impossible and no one could tell us what our future held and what struggles our family would face. It was terrifying. There were a lot of tears and moments of “why us?” But we couldn’t get stuck there. When we went to see Wendy and Dr. Pugh after his release, more tests came in the form of CT scans and MRIs, lots of them, until one day Dr. Pugh wasn’t there and we met with Dr. Mehta. His latest MRI wasn’t good; his hydrocephalus was progressing and he needed a VP shunt, and quickly. Dr. Mehta told us the risks and the benefits, and told us this is our reality. Our five-month-old baby, our nine-pound baby, would need surgery in two days. We spent that day preparing, getting ready for our son to have a catheter put into his brain and run down his little body, into his abdomen. It was terrifying. Lauchlin’s lungs were not strong and the 122

visit and I am hit by an imaginary train at full speed. This is our last hope, the doctors tell us. If this does not work, we are out of options. He goes through 28 high dose radiation treatments and is so sick he is hospitalized for four weeks. In everything he has been through I have never seen him as sick as he is now. My heart shatters into a million pieces. I feel completely helpless. I feel guilt – how could I, as a mother, let my child endure something so horrible? But I know in my heart this is truly going to be the answer to our prayers. I know it to be true with every fibre of my being. Our son has been cancer free for two years and two months! It is amazing to know in your heart that cancer is no longer plaguing your child. It’s amazing to see how far he has come and how far our entire family has come. * Name withheld last time he had surgery (at the NICU) resulted in him being intubated for days. There were a lot of tears, and more “why us.” Once again, Lauchlin was the strong one and we had to follow suit. We would get through this and we would do it together, no ifs, ands or buts. On the leap day in 2012, just one day short of his five-month mark, Lauchlin was in the OR with multiple doctors and nurses. He had the best team possible and we were so thankful for that. He had the VP shunt put in place and rocked the surgery! Our miracle babe did it again, no issues! We stayed at the Stollery for five days. It was hard to flash back to our beginning at the NICU, to be the family with a “sick kid.” This was our reality; we couldn’t show off our baby like most do, there were no trips to family and friends, no big baby showers and we were the “bubble family.” Sometimes I would just sit and cry. My beautiful baby was fighting for his life and it wasn’t fair. Why us? But there it was again – it was our reality. Once again we focused on the positive, fought as hard as Lauchlin fought and got through it. He was ours, he was here, and that was enough. Lauchlin is doing amazing. He has only needed one shunt revision (surgery to replace a portion of the catheter), which went great. We watch closely for any developmental delays as that would be common with his diagnosis, but we are so lucky. Lauchlin has been developing at a rapid pace and is catching up to his peers. He is such a happy boy and has the best laugh. He is his own safety enforcer and is constantly telling others to be careful. It seems he doesn’t want anyone else getting hurt. What a thoughtful young man. Lauchlin continues to visit the neurosurgery team once every three months. This visit usually entails an MRI, and a chat with Wendy, Dr. Pugh, or Dr. Mehta. We welcome these visits and the peace of mind that comes with them. We are so thankful to have their support and expertise in our lives. The Compass

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We are now pregnant with our second child and anxiously awaiting a little brother for Lauchlin. We know he will be the best big brother. His laughs and hugs get us through. We still have the tough days, full of

BRAIN POWER by Kelly Smart

My dear daughter was breech. I had to have a C-section to deliver her because of her breech position. When they took her out I was ecstatic and full of love and joy that my baby girl was finally here. I noticed right away that her head looked a bit strange. I asked the nurses in the hospital about it and they assured me that it was fine. At her two-week weigh-in at the health centre I asked another nurse. She said she would refer us to the Head Shape Clinic at the Stollery Children’s Hospital. That is where our journey with Dr. Mehta and Wendy began. At the age of four weeks we met with them. Wendy took one look at my baby and said she had sagittal synostosis and that she would need surgery to correct it. I sat in the corner and cried my eyes out. I couldn’t fathom the idea of my tiny baby girl having to have to go through a surgery at such a young age. I was a mess. I cried for days. I kept apologizing to my baby for what she was about to go through. I thought it was my fault, that I did something in pregnancy that caused this. Later I found out that this wasn’t the case at all. There’s nothing you do to cause it – it just happens. She was scheduled for surgery on April 16, 2013 at the young age of 11 weeks old. The days leading up to the surgery, I was a mess. I couldn’t eat, couldn’t sleep, and couldn’t stop crying. I knew we were in great, capable hands with Wendy and Dr. Mehta but it was still hard to process. When the nurse came to get my baby, I handed

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vomit, headaches and nights in the ER, but they are few and far between. We are strong, we are together and that is our reality.

her over with a heavy heart and almost dropped to my knees with anguish, worry and heartache. It was the hardest thing I have ever had to do to hand her over. The next few hours felt like it took forever. Finally we saw Wendy and she said it was all done, and that our baby girl did amazing. Tears of joy came rushing out.

I couldn’t fathom the idea of my tiny baby girl having to have to go through a surgery at such a young age. I kept apologizing to my baby for what she was about to go through. The worst part was over. We spent the next two days at the Stollery Children’s Hospital while she recovered. She had some swelling but she was in good spirits. We went home and a few weeks later got her helmet – a cute light one with butterflies on it. She wore her helmet for about four months and when it was all over she had a beautifully shaped head. Looking back now I am so glad it is over, but I know it was worth it. Wendy and Dr. Mehta did an amazing job and have been fantastic through the whole process. We could never thank them enough for their expertise and knowledge and what they did for our daughter. To everyone involved: thank you, thank you, thank you from the bottom of our hearts!

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GRAHAM by Andrew Powell

Graham was diagnosed with hydrocephalus (water on the brain) although his first surgery revealed an arachnoid cyst (a cyst in the lining of the brain). The first indication that something wasn’t right with my son, Graham, was the early onset of puberty. If it sounds like Barry White is in your living room and it turns out to be your seven-and-a-half-year-old son, you might want to look into it. That first moment of realization starts a whirlwind of thoughts and emotions, most of which have no logic behind them, no foundation in fact, and all of which have very unhappy endings. So you head to the doctor hoping it will be easily explained.

We’ll stay optimistic, comforting, and encouraging and we’ll all get through it. But it doesn’t end there for anyone. For Graham, it wasn’t easily explained. Our family doctor was reluctant to even speculate and referred us immediately to a specialist at the Stollery. After that first meeting, the one specialist became three: neurology, endocrinology and pediatrics. After a battery of blood tests, some lasting several hours, and a CT scan an MRI finally revealed the culprit: hydrocephalus. The only solution was surgery. It’s maybe the most surreal experience you can have as you stand in a neurosurgeon’s office with your child while the doctor uses a pen to gesture where, in your child’s skull, he’s going to drill. I can’t say that my mind has ever managed to wrap itself around that one. I hope it never does. But this is when the “relax, everything will be fine” thoughts started, probably to mask the deeper, darker thoughts that my life, and the life of my child, just changed forever. Graham underwent his first surgery just a few weeks after the diagnosis. The procedure is called an endoscopic third ventriculostomy (ETV) wherein the surgeon creates a channel between the third and fourth ventricles of the brain because there’s an obstruction or some other blockage in the cerebral aqueduct. The operation revealed that Graham had an arachnoid cyst in his brain. The surgeon created several drainage points in the cyst, and after a night in the hospital my wife and son were home. Graham was put on monthly injections of Lupron to help suppress the puberty, and my family breathed a sigh of relief.

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When the symptoms came back nearly a year later, we knew Graham was probably headed back to surgery; we had been warned at the beginning that the ETV might not work and, given that the first surgery didn’t go exactly as planned anyway, we all braced for the worst. So 13 months after his first surgery, Graham was “under the drill” again. This time, the procedure was far more aggressive, and they also installed an EVD (extra-ventricular drain), a temporary tube from Graham’s head to drain and monitor his brain fluid and to rebalance the pressure in his brain. There were issues related to the EVD, and Graham found himself in for a third surgery, this time to install a cerebral shunt. His second hospital stay ended up lasting five weeks, during which my wife never left his side. During these five weeks, I had to continue working. I felt guilty at first that I couldn’t be there more for my son – in addition to working, I had to look after our daughter. Really, though, I think that was the best thing I could do; I had to be at home to work anyway, so I settled into my job as single parent to our daughter and resupply staff for my wife. Graham continues to have monthly injections of Lupron, but many of the symptoms are ongoing. At times, the effects of both the surgery and the hydrocephalus on his motor-skills and memory make him frustrated and upset. I think, maybe, this is the most important part of the process for parents: of course parents are going to be there for their kids during surgeries or hospital stays. We’ll stay optimistic, comforting, and encouraging and we’ll all get through it. But it doesn’t end there for anyone. There are always the memories of the day you realised something was wrong, or the thought that someone drilled a hole in your kid’s head, or the early morning you watched your child wheel away. And for the child, they have real, first-hand trauma to deal with, quite often with life-altering consequences. You can never be too compassionate, too understanding, or too patient. Kids can be remarkable pillars of strength, but they need to know that, however they are and however they’ve changed, you wouldn’t change a single thing – you love them and are proud of them exactly as they are. TIP: Read about hydrocephalus in detail on page 39, in Chapter 1: Diagnosis.

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DADDY’S BOY by Trevor Bosma

Oliver was born November 28, 2011, the proudest day of my life. Not only was I a father but I had a son, who would be my best buddy. At four months old, Oliver had the task of taking care of daddy while mommy went back to work. Little did we know that staying home with daddy would turn Oliver into a hockey-crazy child. At seven months old Oliver said “hockey” for the first time. At eight months he was introduced to a hockey stick. At 10 months old Oliver was walking around the house with a little hockey stick, shooting balls at me. He walked around everywhere with his hockey stick. On February 28, 2013 Oliver was diagnosed as a type 1 diabetic, at only 15 months old. This was a shock to my wife and I, but it explained a lot about how Oliver was acting the past few months. Illness that took me two days to get over took Oliver two months. Oliver’s weight fluctuated greatly. After his type 1 diagnosis, Oliver gained back most of his weight and started to look healthy again. When he turned 18 months old he slowly stopped walking and regressed back to crawling. He stopped playing hockey and riding his bike. We took Oliver to the doctor to check his ears for an infection. The doctor said his ears were full of fluid and this was probably why he was having trouble walking. We had taken Oliver swimming three days in a row and I accidentally dunked him during a trip down the water slide. We were sent home with a prescription for Claritin. After a month of Oliver taking Claritin he still was struggling to walk. He was now terrified of heights. We also noticed that his eyes were starting to cross. He refused to eat anything and he was constantly banging his head on the floor. My wife pushed the doctor for an MRI. We were praying it was not a brain tumour and I remember always telling my wife to stay positive and not to think about brain tumours. I was terrified of the thought of a brain tumour. My grandfather had survived six major brain surgeries to remove brain tumours and I saw first-hand how it affected him. The day of the MRI I took my pregnant wife, due in two to three weeks with our second child, and my toddler to the Stollery. Oliver was scheduled for a 30-minute MRI. After nearly 60 minutes we started worrying about his blood sugar and my wife was requesting we go in to test him. No one would give us a straight answer, and they kept saying he would be out shortly. We explained multiple times that Oliver was a type 1 diabetic and if he went low in the MRI he would go into a coma. Then my wife’s cell phone rang. As I am trying to calm my extremely frustrated pregnant wife her phone is ringing and ringing. Finally she said “It’s Dr. Sukrahni,” Oliver’s pediatrician. As I am sitting in the waiting room watching my wife talk on the phone I start thinking to myself, “Why is his MRI taking so The Compass

long? What did they find?” Then I see my wife collapse to the floor. I run over and grab her. As my wife is lying in my arms she is crying uncontrollably and trying to tell me what is wrong. I finally hear her say, “It’s a tumour.’’ My world stopped. How is this little person, not even 20 months old, already going through more trauma in his life than most of us will in our entire time on this earth? We sat in that room begging to see Oliver, my wife crying, me in complete shock with tears running down my face and two members of the neurosurgery team talking to us but I heard no words. They finally let us see Oliver. I thought I had failed as a father because I could not protect him. Oliver was admitted to the ICU and the doctors informed us he was to have emergency brain surgery in the morning. As Oliver played and flirted with the nurses, as he is quite the ladies man, my wife and I spoke with Dr. Mehta and Wendy. They showed us his MRI results and his tumour. It was the size of a large Christmas orange and was located at the back of his head. These questions were a few of many running through my mind. Dr. Metha informed us of all the possible complications and steps to be taken throughout the night and surgery in the morning. He asked a lot of questions: how does he eat, how does he sleep, is he happy, do his eyes cross and is he delayed?

My world stopped. How is this little person, not even 20 months old, already going through more trauma in his life then most of us will in our entire time on this earth? Everything started to make sense. Oliver was a fussy baby because he had a tumour pushing on his brain and brain stem his whole life. He would only eat mush because he couldn’t breathe when he tried to swallow solids. He took three big breaths and paused for 10-15 seconds as he slept because his airways were blocked and this caused sleep apnea. He wouldn’t walk anymore and was terrified of heights because the pressure on his brain made him dizzy. He would go cross-eyed because of the pressure on his optical nerves. He would cry and get upset when he got excited to see family and friends because it put pressure on his head and it gave him constant terrible headaches. Dr. Metha sat with us and explained all the possible complications. We were terrified. There was a one-percent chance of death and a 10-per-cent chance he never speaks, eats or breathes on his own again. They also informed us to plan for five to six weeks in the hospital as the recovery from brain surgery is a long, hard road. We cried all night, holding Oliver while all three of us curled up on a single-person hospital bed. 125

• Stories from Parents •

At seven in the morning, we wheeled Oliver down to the operating room. Oliver woke up and told my wife and I he loved us and we gave him hugs and kisses. I grabbed Dr. Metha, hugged him and said, “Please save my boy.” One hour felt like a day, three hours felt like a month and finally after four hours (which felt like an eternity) we got good news. They had removed 90 per cent of the tumour; they only had a piece left on the brain stem and it needed to be dealt with very carefully. Wendy told us to expect Oliver to be in surgery for another four hours. After an hour, Wendy arrived back upstairs. They got all of it! I was so proud of Oliver. Then came the news: they wouldn’t know if he could talk, eat, see or walk until he woke up. My wife and I held Oliver’s hands all night. The next day Oliver started to swell up like a balloon. Still he woke up, and he said, “Mommy, daddy.” Day three came and Oliver was in constant pain. Yet he still tried to crawl out of bed, drink fluids, talk to us (and his speech improved at lightning speed) and read books with us. By day four, Oliver was trying to pull every tube attached to him off and he was pretty successful. Oliver was now on the road to recovery and at a pace that shocked even the doctors. We were moved out of ICU and into a room with three other children. Oliver would not stay still. He wanted to get up and play, to read, to watch TV and to eat. I was so proud of him.

They wouldn’t know if he could talk, eat, see or walk until he woke up. My wife and I held Oliver’s hands all night. The next day Oliver started to swell up like a balloon. Still he woke up, and he said, “Mommy, daddy.” Oliver was quickly known around the ICE unit as “Superman.” Oliver’s recovery time was unbelievable. Every day we would go for car rides, play foosball in the playroom and eat at the cafeteria. On day two, in the pediatric unit, Oliver tried to walk on his own. He let go of my hand in the playroom and tried to walk to the toys. I walked behind him with my hands around his sides waiting for him to fall. Proud is an understatement, I was so shocked at what he was doing after only eight days post brain surgery. Each day that passed Oliver got stronger and stronger. On August 18, 2013 my wife and I took Oliver for a car ride. As I held my wife’s hand she suddenly squeezed it. I looked at her and said, “Are you okay?” She replied, “I was keeping it quiet but they are getting worse. I am having contractions every five minutes.” I told

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Oliver that his sister was coming today and my wife organized a ride to the Grey Nuns hospital to deliver our daughter. When my wife left Oliver and I she was having contractions every three minutes. Oliver was still at the stage where if my wife or I were not in his presence, he’d lose his mind. So while my wife had our second child, her mother, sister and best friend took my place to help her through it. I was hurt I could not see the birth of my daughter but I knew how strong my wife was and that she was in good hands. My sister-inlaw sent me videos of my daughter immediately after her arrival into this world. She also sent me pictures, texts and I had a quick phone call with my wife. Oliver had a new baby sister only days after his brain surgery, and he was so excited. When Oliver went to bed a few family members took my place beside his bed while I raced over to the Grey Nuns to meet my daughter and comfort my wife. My daughter was healthy and beautiful, and my wife was feeling ready to get back on her feet and to Oliver’s side. On August 25, 2014, only 12 days after major brain surgery, Oliver was allowed to go home. No one could believe it! After being told he would most likely be in the hospital recovering for five to six weeks, we never dreamed he would be going home two days shy of two weeks. When Oliver arrived home with my wife, his new baby sister and me it was like a weight lifted off his shoulders. Oliver was running around telling us everything he saw – the balloons dropped off for him and his baby sister, the chocolates left for him, new toys from friends and family and the new lawn grandpa had installed with the help of some other family members. Seeing Oliver so engaged was an amazing feeling. I guess it was like a weight lifted off of my shoulders as well. I was so proud that Oliver, aka Superman, recovered so fast, and proud that my wife was so strong before, during and after all that happened with Oliver and the birth of our daughter. And I was so thankful for our amazing family and friends. Oliver is walking, running, jumping, talking and swimming, and everything is taking off at rapid speed. He surprises us daily with his new words, sentences and goofball antics. Oliver is still about six months behind all his friends in his development but in due time he will catch up to his buddies and we will be there to encourage him as he develops new skills. I truly do cherish everyday and live each day as though it is my last with my family. Life without Oliver would destroy me and I am so thankful for everything Dr. Metha, Wendy and all the neurosurgery team did for Oliver and our family.

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• Stories from Parents •

A FATHER’S DREAM by Danny Da Silva

A long time ago I was once a good man. I had done everything right and was now awaiting the birth of my second child to complete my family. The birth of my youngest son was going to be a memory that I would cherish much the same way as I did my oldest son. The journey of the “second child” is one that we sometimes take for granted especially if all signs point to a normal journey. Unfortunately, in my case my wife’s typical pregnancy would change in the blink of an eye. My life took a turn into a world that until now was foreign to me. Overnight it seemed as though the world that I knew so well came crashing over top of me and for a long time I wondered if I could ever get out of the rubble and find my way again. I was now the father of a child who had medical complications and a disability. Learning how to raise a child with a disability is a difficult process as you have to learn how to understand the demands and challenges of raising a child with more complicated needs. This process isn’t easy and can have profound effects on the father. No father wants his child to be sick, or harmed in any way. It is not an experience anyone expects to have, but nonetheless I must have it. Like most fathers, I selfishly dreamed up a life for my unborn son. I had mapped out all of the things he was going to do and see even before he was born. I had lots of dreams. When I was told that my son was going to have extra obstacles in life and no one could really tell me what the future would hold for him, those hopes and dreams I had quickly disappeared before my eyes. I quickly realized early on in my journey that I was grieving the loss of the life I thought I was going to have with my son. I felt so sad, confused, disheartened and angry that at times I felt like I was walking a very thin line between sanity and insanity. I suppressed my emotions, thoughts and tears. It was the only coping mechanism I had. At times the anger inside of me was too much for me to handle and sometimes I lashed out. Right or wrong, I lashed out. The unfortunate outcome of that is that I hurt my loved ones, more specifically my wife and two young children. As a father I was the one responsible to make sure my son was safe and protected and I was

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angry at the fact that I couldn’t do anything about it. Even though there was nothing that I could have done, for the longest time I had felt like I had failed him. I had felt like I was less of a man because I couldn’t protect my family.

I felt so sad, confused, disheartened and angry that at times I felt like I was walking a very thin line between sanity and insanity. I suppressed my emotions, thoughts, and tears. It was the only coping mechanism I had. The highs and lows I faced took me to rough and dark places. Being a father of a child with a disability I felt at times overlooked and under-supported. I didn’t know who to talk to. I was already a very guarded and private person and now I was in crisis mode and I didn’t know who I felt safe sharing my feelings with. I definitely couldn’t share with my wife because she was also struggling to find the answers. I felt like there wasn’t any emotional support and I was embarrassed to ask for it. I didn’t know who to turn to to talk about my stresses and the challenges I was facing. None of my friends and family had experience with this topic so I felt I needed to keep things bottled in and hope that no one saw me crack. I had to look strong in front of my wife and two sons; after all I was supposed to be the pillar that held the family together. The birth of my son has made me and the people around me better people. As time continues to pass, I am continuously growing and learning to deal with the difficult challenges that are put in front of us. My son has opened my eyes. Although he is only four, every day he is teaching me to be a more compassionate, empathetic, loving husband and father. In life I thought the father would teach the son, but in reality it is the son teaching the father. A long time ago I was once a good man; now I am a better man.

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• Stories from Parents •

ASHLEY by Dianne Dale

My daughter Ashley was born on January 3, 1993 and it was the happiest day of my life. She was a healthy baby girl full of energy. At 14 months she started showing signs of weakness to her right leg and right arm. Her left eye was starting to shut and being a new mom I had no idea what was wrong. Within a week she was unable to keep food down. We took her to the emergency department where we were introduced to Dr. Aronyk. From that moment on he never left Ashley’s side. He ordered an MRI and our world was turned upside down. The results showed a bleed in Ashley’s brain. Dr. Aronyk performed an emergency surgery not knowing what he was going to find. He said it could be a tumour or an aneurysm. He also said that her chances of survival were less than 25 per cent. The surgery was 12 hours and every second seemed to last for hours.

Our children are true angels; they are strong, courageous and full of hope and love. We all can learn from them. I believe that all things happen for a reason. I will never forget the moment when the surgery was complete and Dr. Aronyk said that she made it and that she did great. He told us it was a cavernous malformation on the stem of her brain and that she would need rehabilitation and continuous MRI scans. Ashley grew into a healthy, beautiful young girl who was incredibly active. She played soccer, volleyball and did hip hop dance. All the while, she still continued MRIs on a regular basis. When Ashley was 12 years old, she was on a modelling photo shoot when she complained of her right leg feeling weak. We also noticed she was dropping things. We did not think it was anything as she had been doing so well for so long. We booked an MRI as it had been time for the next one, and once again our world fell apart. She was hemorrhaging again. We could not believe this was happening. She was booked in for her second surgery and Dr. Aronyk was optimistic. At this time we were introduced to Wendy, the nurse practitioner of

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neurosurgery. Wendy and Dr. Aronyk never left her side or ours. Dr. Aronyk told us that we needed to prepare ourselves that the chances of Ashley being in a coma for several months. We would deal with anything we had to, as long as she survived. Once again the surgery was over 12 hours and she made it through. She was awake and looked at Wendy and said, “Hi Wendy!” It was a miracle again! Ashley had to learn how to walk, talk and write again. Her strength, determination and will to live was remarkable. She never gave up. She was just at the point of going back to school full-time and getting back to her life with her friends when we once again noticed weakness. Ashley underwent her third brain surgery, this time in Calgary because there was no MRI in our operating room. It was devastating to not be in our hospital, the Stollery. Dr. Aronyk and Wendy travelled to Calgary and were by her and our side once again. Dr. Aronyk said that this surgery would be so aggressive and there would be so much damage that the chances of her walking again would be almost zero. Ashley’s surgery was 14 hours long and for the third time a miracle happened. Nine days after surgery we were transported to the Stollery in an ambulance and she recovered there for another two weeks. We went to the Glenrose Rehabilitation Hospital and Ashley our true hero and fighter came through again! The doctors were amazed by the miracle of Ashley starting to walk again. Ashley is now 21 and continues MRIs and rehabilitation on her walking. She is working at the Stollery Children’s Hospital under Dr. Aronyk and Wendy and wants to do whatever she can to give back and help children. She participates in volunteer work and fundraising for the Neurosurgery Kids Fund. As a mother of a sick child it is so difficult to find the words to describe the pain. All I wanted to do was take her pain away. Children should never be sick. When your child is sick the world outside stops, and nothing matters but your child. Our children are true angels; they are strong, courageous and full of hope and love. We all can learn from them. I believe that all things happen for a reason.

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• Stories from Parents •

MY INSPIRATION…MY SADIE By Shannon Schmidt My miracle, my inspiration and my hero entered my life in a flash… all one and a half pounds of her, 16 weeks early! In some ways it feels like just yesterday, as the emotions can come back so strong and clear. My third daughter who was frail, clinging to life and expected to die overnight would capture my heart, causing me, in a split second, to become her advocate. Having almost lost her many times, over countless procedures and surgeries and a massive brain bleed, and with her consequent shunt placement behind us, we thought there was nothing that could be worse. It was then that we were dealt another blow. I was alone, rocking her in the NICU when I was told that our precious girl was deaf. It was a blow that I can still feel to the core of me. I was somewhere in the cycle of grief about her early arrival and the serious impact it had on her brain and future development, so when the audiologist told me my baby had not heard me sing to her, talk to her, and pray for her for over 180 days in the hospital, I spun back straight to denial. It took time and patience, the support of my husband and daughters, and I soon came back up for air and began treading water again. Although the medical world gave us a very gloomy prognosis, with the worst case scenario, we fought on with hope, prayer and faith. Our lives were changed forever the day Sadie was born, and so were the lives of our first two children. We didn’t know the struggles we would face in days, weeks and months ahead. Living two lives, one in the NICU with my baby and one at home with my two other children, lasted six months.

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It was the most difficult time in our lives. Looking back I have no idea how we did it. It is all a blur. But we put one foot in front of the other and made life work the best way we knew how. We could have never imagined how much this teeny helpless micro-preemie would teach us and change us for the better! Six years later, looking back I see this as a beautiful journey. It is never easy; in fact, it is hard a lot of the time. I don’t like that my older two girls get the leftovers of me a lot of the time. I don’t like that Sadie experiences pain, hospitalization, fear, surgery and a childhood full of appointments instead of playdates. I don’t like that we have to make decisions that other families don’t have to make.

Looking back I have no idea how we did it. It is all a blur. But we put one foot in front of the other and made life work the best way we knew how. But I love how far we’ve come. I love how much we’ve grown as a family. I love how much we’ve grown in our faith; I love the compassion that exudes from my family because of what our miraculous girl has taught us. I love that we’ve met people we’d never have met if our life was “normal.” I love that I get to celebrate milestones that other people take for granted. I love that I get to be these three kids’ Mom, and I wouldn’t change any of them for the world!

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• Stories from Parents •

I SEE YOU by Ellen Stumbo

Having a child with a disability can be difficult. There are moments you wonder if anyone will ever understand or get what it is like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible. But you are not. Today, I want to tell you that I see you. I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful. I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous. I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.

I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful. I see you at the support group. New parents are visiting with their baby. They seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate. I see you walking into the school for the third time this school year, with a binder full of notes, lists, and goals. You don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.

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I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave. I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible. I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous. I see you at social gatherings where well meaning people ask ignorant questions about your child or their disability. They make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious. I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable. These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you. Ellen Stumbo writes about finding beauty in brokenness with gritty honesty and openness. She’s passionate about sharing the real – sometimes beautiful and sometimes ugly – aspects of faith, parenting, special needs, and adoption. Ellen’s writing has appeared on Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia and the Huffington Post. She blogs at ellenstumbo.com Reprinted with permission of writer.

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Sibling support information and stories When a family is dealing with a serious medical issue for one of its members, it takes a tremendous toll on the whole family and siblings are no exception. Being aware of the confusion and stress that the healthy children in your family might be feeling is important. This section is designed to give you an idea of some of the emotions your other children might have and to also share with you the stories of a few siblings. We asked a few parents about how their other children felt and these were the more common responses: • Confused • Worried that they will get sick also • Worried that their sick sibling will die • Guilty because they’re healthy • Resentful because the ill child gets more attention • Sad because they miss their parents/siblings • Nostalgic for the way they were before • Anxious of being away from parents We asked for a few ideas to help siblings deal with the illness in the family: • Seek support group for your child. We have included a few sibling support groups that we found below. Ask around or do an online search to see if others are available in your area. • Keep communication open by encouraging siblings to talk. Having quiet time with your healthy child might help them open up.

• Try to maintain as normal a schedule as possible. Giving your children advanced notice might help them deal better with the events taking place. For example, put a calendar on your fridge and write in or draw pictures of events that you know are coming up. Discuss these in simple terms that your child will understand and do it often. An example for smaller kids is, “In two days, mommy and brother Billy will be going into the hospital. You will sleep at your uncle’s house for two sleeps then mommy will be back on Friday.” • Spend some alone time with your healthy child. • Be patient. This is so hard when you are emotionally and physically exhausted. But know the little ones are hurting too. • Include siblings in treatment and care such as getting a warm blanket for their sick sibling and letting them help tuck them in. Have them create a card for their sibling and place it at the bedside. • Inform your child’s teacher about the current situation. This might be another way for them to get support. • Include children in fundraising or activities to give back to the community.

NEUROSURGERY KIDS FUND Super Sibling Days are special events hosted by the Neurosurgery Kids Fund where siblings are celebrated for being amazing brothers and sisters to their medical siblings. Each event will be unique and guaranteed to be fun. Follow us on facebook or neurosurgerykids.com for more information. • Sibshops The City of Edmonton hosts workshops for siblings of children with mental, physical or developmental special needs. The workshops provide the opportunity for peer support and education for the sibling while being fun and recreational based. There are a variety of sessions for different age groups. Visit edmonton.ca and search for “Sibshops” or call 311 for assistance. • Kids with Cancer – Sibling Support Kids with Cancer offers workshops that are focused on helping brothers and sisters deal with the illness in the family and the stressors that surround it. The Compass

Each session includes group and individuals activities. For more details visit kidswithcancer.ca.

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• Sibling Support Information and Stories •

MY BIG SISTER by Jake Beaudoin

Jake, can you tell us a bit about your sister Olivia? My sister has a shunt. She is afraid of needles. She hates oranges. Sunday, Monday and Tuesday she had to go to the hospital. I was sad because I miss her. Sometimes they hurt her in the hospital. She is brave sometimes. She is so big when she is brave. I hate it when she is in the hospital. I miss my mom and dad. They are sad

sometimes. I stay with my iniina (god mother-nanny). I want the doctors to make her better. I also want ice cream. I’m always waiting for them to get home. I love my sister. *Jake’s big sister has undergone 31 brain and spinal surgeries. She is 10 years old.

MY LITTLE BROTHER by Jacob DaSilva When my little brother went away to therapy for seven weeks, I drew him this picture and put it on my bedroom door. I love my brother and I miss him when we are not together.

THE BIG BROTHER by Sam*

My name is Sam. My little brother Declan had cancer. He had tumours in his spine. He is always sick. He is at the hospital lots and my mom always has to stay with him. I wish she could stay at home but if I was at the hospital I would want her there so I guess my brother wants her there too. I hate when they stay at the hospital. I miss my mom and brother. It’s different when they are not home. My brother had surgery on his back two times to take the cancer out.

My mom says I am allowed to be mad and sad sometimes but that God picked us to be his family and me to be his big brother because he knew I would be perfect, and I could watch out for him and help him when he needs help, so I do. The cancer would not go away so they radiated him on his spine. It made me sad cause it made my brother really sick. His cancer is finally gone. I am happy because my brother got to come home and live with us now. My brother had friends who died of cancer. My mom

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and dad told me my brother was not going to die. I knew they were right. The nurses and doctors are really nice to my brother. He likes them. He pretends to be a doctor all the time and my little sister is always his nurse. My brother sometimes wears a cast on his hand because he had to have his finger amputated because he had lots of infections in his bone and he broke his arm too. My brother is trying to walk. He works very hard and has lots of equipment to help him. My mom says one day he will walk but he might just have to use a walker. I wish he could skate and play hockey with me. He crawls everywhere. He pretends to skate on his hands. That is how we play hockey in our house. We always have fun playing. Sometimes I get mad cause we do not do all the stuff my friends get to do with their brothers and sisters. My mom says I am allowed to be mad and sad sometimes but that God picked us to be his family and me to be his big brother because he knew I would be perfect, and I could watch out for him and help him when he needs help, so I do. Everyone tells me I am an awesome big brother. *Name withheld

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• Sibling Support Information and Stories •

MY AMAZING SISTER by Ella Schmidt

My little sister is truly a miracle. Her name is Sadie. I am five years older than her. She was born as a preemie (which means she was born way too early). She was cute, loveable and small. I knew right from the start that she would be my sister no matter what happened. All you need is love! The doctors said that she would not speak, hear, walk or see. They were wrong. She can see and speak and run, but she can’t hear. She has a hundred thousand dollars of equipment that helps her hear. Sadie almost died lots of times. She has a shunt in her brain to help her live. I wonder how that feels? In six years she has had more than 12 surgeries. We prayed and prayed.

MY ANGEL – MY SISTER by Denean Dale

My sister Ashley had her first brain surgery when she was a baby. At this time I did not know her. When my dad met my stepmother Dianne, I knew about Ashley and her brain surgery when she was a baby but we all thought we wouldn’t have to deal with her going through that tragedy again. Ashley was a six-year-old little girl who loved playing games, having teddy bears and hanging with her new big sister. Ash and I always had so much fun together. No matter what we were doing we would have a blast doing it. As the years went by we became closer and closer. Six years and many family vacations and fun times had passed by so quickly. Ash was 12 years old when we found out her brain had hemorrhaged and she would need surgery again. This was traumatic to my family and me. We all were in such shock that this was happening to this fun-loving little girl who deserved so much more than to spend her days in a hospital when she should be out playing and having fun. I had a sense of hope that Ashley would make it because her strength was much more than the hemorrhage in her brain. She survived that and had the strength and determination to get better and not only did she have to deal with brain surgery, she had to relearn how to walk and talk. It was only a short eight months later that she had to undergo her third surgery because her brain hemorrhaged once again. At this point in my life I had got into makeup school and was half way through when I got the news I just broke down. I couldn’t handle the stress again and having to be strong for my family and Ash. So I dropped out and quit my job to be there for my family. I remember trying to talk to Ash on the phone when she got out of surgery and although no words were

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Sadie is really fun. She loves to play store; it is her favourite game. She loves it, and when I say love, I mean LOVE! She loves to play with the money – she calls it moneys. If she finds it, you won’t get it back. Sadie likes popcorn – she calls it cupcorn. Sadie is my wake-up call on school days. She will come in and say good morning and jump on me. Nobody knows how much I love her. I love her and I won’t like it if she meets up with a bully. She goes to the same school as me now. I am proud of her. I will help her on the bus and at school. I am thankful for Sadie and that God has brought her through all of this so that we can play together. Sadie is very fun to play with and I love her.

making sense, you could tell that she was happy to hear and talk to me. Ashley was 13 at this time and had to once again relearn how to walk and talk. This whole time my heart was broken for her. I just wanted to see her running outside and playing like a normal 13-yearold teenager. There was a fire in Ash, and a strong desire to recover. Her will to live was much more than all of us and the doctors could imagine. Ashley taught me a huge lesson in life – never give up on your dreams and goals. Life is so short and it can be taken from you in an instant. I am so thankful to have her in my life. Ashley inspires me to be a better person and appreciate the things in life that you normally wouldn’t think twice about. She continues to push herself and do things that people told her she wouldn’t be able to. Ash always tells me to never give up on my dreams and I have finally applied to one of the most prestigious makeup schools in the world and have been accepted.

Ashley taught me a huge lesson in life – never give up on your dreams and goals. Life is so short and it can be taken from you in an instant. I am so thankful to have her in my life. If I didn’t have the strength and support of my sister I would have never accomplished this. She truly changed my life and although it is unfortunate that she had to go through all the pain and suffering, she came out and showed the world beauty. Ashley gives young kids a reason to live and confidence that they will survive. My sister Ashley is my angel.

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Stories from family and friends If you are a friend, family, or health care provider, it is not always easy to know what to do or say to parents when they are going through a medical crisis or loss of a child. This section will offer a few ideas on how to be a supportive individual during this challenging time.

I’LL ALWAYS BE HERE by Emelie Marie Diez

I cannot ease your aching heart, Nor take your pain away; But let me stay and take your hand And walk with you today.

I’m here and I will stand by you, On each hill you have to climb; So take my hand, let’s face the world... And live just one day at a time.

I’ll listen when you need to talk, I’ll wipe away your tears; I’ll share your worries when they come, I’ll help you face your fears.

You’re not alone, for I’m still here, I’ll go that extra mile; And when your grief is easier, I’ll help you learn to smile.

“WHAT CAN I DO TO HELP?”

This can be a difficult question to answer when all of your energy is going into caring for your sick child, or worse yet, grieving their loss. It can be difficult to think of how to meet your basic needs or the needs of other members of your family when you are struggling just to breathe. We hope that this list makes it a little easier for those friends and family to decide in which way to offer their help during your time of need. This is a compilation of suggestions from families with a child who was given a major life-altering diagnosis, a child who has spent a significant amount of time in the hospital or who has had a child die. If you truly want to help, don’t just offer – pick one of these to do from the list below. The family will be so truly appreciative of whatever you choose. • Add a meal or two to their freezer. • Offer to drop off food at the hospital at meal times including disposable plates, cutlery and dishes that you do not expect back. Respect the fact that the family may not be up to visitors, but it does not mean that they are not appreciative. • Bring fruit! Fruit baskets, fruit arrangements, fruit salads. It is nice to have something healthy that does not need to be heated up. • Help to organize meals for the first 30 days – mealtrain.com is a great resource. Put out a cooler at the home so that people dropping off meals have somewhere to put them in case the family is busy or not at home right then. • If there are other children involved, try to help out in a way that is natural for you. Often parents are consumed with the sick child or the loss of their child and knowing that their other children are being cared for and are having fun helps them feel less guilty. Some ideas: play, read books, do lego, offer to pick 134

them up and take them on an outing somewhere – swimming, the park, etc. • Drop off baked goods. • If you would like to send flowers, choose ones that are easy to care for and require little maintenance. Better yet, have fresh flowers and a kind note waiting for them at home. Balloons are a good alternative for in hospital because of allergies. • Bring a piece of home to the hospital – offer to pick up anything that they may need and bring it to the hospital. This might include a favourite pillow/blanket/stuffie, clothes, personal items or medications. • Arrange for someone to come to the hospital to give the parent a neck and scalp massage. • Help out around their house – send them a few dates where you are available, and show up to clean, do laundry, vacuum, dust or just tidy up. If they are living in the hospital, just go over and clean everything. • Put a tea basket together. Maybe add some chocolate. • Run errands for them. • Help with yard work like mowing the lawn, pulling weeds or raking leaves. • Bring them a beautiful journal to capture their overwhelming emotions and thoughts. • Offer to bring breakfast. • Don’t be afraid to be curious and to ask and learn about the illness. It shows you care. • Offer to help set up a blog for them if they enjoy writing and would find it therapeutic. • Get a group of friends together and work on a project. Build a fence, for example, or fix a deck. • Make something for their child using your talents that is specific to their condition – if their child has The Compass

• Stories from Family and Friends •

hydrocephalus, for example, crochet the child a special toque to fit their head. If they have sensory issues make a weighted blanket. • Offer a listening ear. • Offer to take the parent out to a nearby restaurant or to take them for a pedicure to a nearby spa. Ensure that they explain to the spa that the parent’s child is in the hospital and they may need to cancel without giving adequate notice. • Bring something special just for the siblings. The sick child tends to get a lot of gifts so it is nice to surprise the other children with something special also. For the family whose child has died: • Do any of the above. • Do not be afraid to talk about their child. Acknowledge their child by name and reminisce about them with the family. Parents love talking about their children whether they are here or not.

“WHAT DO YOU SAY?”

Here are a few comments that families have shared with us that they found supportive and ones that were not. The truth is there are no rules of what to say. There are, however, definitely some things that are more comforting. Supportive things to say: • I am so sorry for the illness of your child. • I wish I had the right words. Just know I care. • I don’t know how you feel, but I am here to help. • You and your loved one will be in my thoughts and prayers. • I am always just a phone call away. • We all need help at times like this. I am here for you. • I am usually up early or late, if you need anything. • How is your spouse, other children, or grandparents doing? • It is so nice to see you. (Instead of “how are you?” Only ask that if you want to hear an honest answer.) Supportive comments focused on the loss of a child: • Tell me about (Name)’s last day. • I remember this about (Name). • I am so sorry for your loss. • My favourite memory of (Name) is…. • Ask what happened and listen to the whole story with attentiveness. • I am sorry that your child couldn’t stay here on earth with you longer.

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• Do something to acknowledge each anniversary date – one month, two months, three months, six months, one year, two years, etc. Even just a handwritten note using the child’s name is perfect. • Do something to honour their child, like tree/ flower planting, a star donation, a donation to their charity of choice in their child’s name, a painting, or memorial jewelry. • If you are talented, write a poem or make a beautiful scrapbook of their child or cards that were given to the family at the memorial/funeral. • Be there for six months, one year, five years or 10 years down the road. Grieving the loss of your child is a lifelong journey.

“A little spark of kindness can put a colossal burst of sunshine into someone’s day” – Unknown

Remember: • Ask something about the child every time you see their parent. • Realize that parents love talking about the child and even if they cry, that is OK. No one can ever make them more sad about her; that has already happened. • Ask to see photos of the child. TIP: More information on bereavement can be found further along in this section. Unsupportive things you want to avoid saying: • God only gives you things you can handle. • It will make you a better person. • I know what you are going through. (Don’t say this unless you do.) • Special kids are for special parents. • I don’t know how you do it. • Tomorrow is another day. • Everything happens for a reason. Unsupportive comments after losing a child • Comparing their loss to the loss of a pet. • That it’s God’s will, or that it’s for the best. • He/She’s in a better place • Do you think you are depressed? • Are you better now/yet? • Are you over it?

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FROM THE OUTSIDE LOOKING IN by Carla Rodych I knew deep down in my heart my nephew was going to fight. I also knew his parents would find the very best possibilities for him. My presence was there right from the beginning, the evening he took his first breath into this unfair world. I left that hospital minutes after I saw a beautiful healthy baby boy. The next morning I woke up excited and called to see how our new baby boy was doing. It took several tries but I finally reached the new daddy, but something was wrong in his voice. I was forceful, and finally with a crack in his voice he managed to whisper, “They found something.” He didn’t have the courage to continue. I immediately left and raced to the hospital. I did not care if they wanted me there, I needed to be there. I loved this little boy too. A few hours after my nephew was born, his mommy and daddy received frightening news with horrible statistics and they began their journey into the unknown. I watched as they explored every aspect of his prognosis, the ifs, ands and buts of a very sick baby. I knew I couldn’t change anything, or say anything to make them feel better. I decided right from the start I would be a part of

their support network. I have learned that the best you can do is be available. Call frequently; if they pick up and spend even just a couple minutes with you, it’s a very good sign. If they don’t answer that’s a bad sign.

I decided right from the start I would be a part of their support network. I have learned that the best you can do is be available. Let them cry. I realized after spending many hours on the phone with my nephew’s mother that sometimes she just needed to cry and have someone genuinely listen. Don’t be afraid to cry too. If you had said “call me if you need my help” and they actually find the energy to ask for help be true to your word and drop what you’re doing and help immediately. Your job as an outsider is to keep mommy and daddy as healthy as possible so they can fight for their baby. Most days are hard, but eventually hope pours in and then they truly believe that nothing will stop them; you just need to make sure they are patient and strong enough to get there.

OUR GRANDDAUGHTER OLIVIA by Judy and Doug Mercer Our journey as the grandparents of a child requiring a lot of medical attention started when Olivia was born 12 weeks premature. She spent the first two months of her life in the NICU at the Royal Alexandra Hospital. At the age of 11 days she suffered a bleed in the ventricle of her brain. As a result she is hydrocephalic and has two shunts. Right from the beginning our role as a family and as Olivia’s grandparents has been to love and support our granddaughter. When Olivia is in the hospital our daughter stays with her. It’s very important for us as her grandparents to be at the hospital for all surgeries and serious procedures. It offers both physical and emotional support to Olivia and her parents It has been and will be a roller coaster of highs and lows, worry and elation, stress and joy and many other emotions when dealing with various procedures we’ve seen our granddaughter go through. The hardest part is seeing her so very sick, and not being able to do anything to take away the pain or make her feel better. Your heart will ache and your emotions will surface. When that happens we find it best to leave the room for a few minutes to compose ourselves. Olivia is sick enough and she and her parents don’t need to have added stress by seeing us upset. There have been many

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sleepless nights. The best philosophy we have learned to live by is “this too will pass.” When things get tough there’s only one way to go and that’s up. We have faith that one way or another that things would work themselves out and get better. So far that has definitely been the case. We feel another very important role is for us to help make life for the other two children as normal as possible during Olivia’s hospital stays. Knowing the other children are taken care of takes worry and stress off of Olivia’s parents. We have the children stay at our place or we stay with them in their own home, make sure they get to school, that homework is done, and they get the attention they deserve. We take them up to the hospital to visit their sister and parents every day if at all possible. Taking a home-cooked meal to the hospital for our daughter also helps. Olivia is a normal, spunky, incredibly strong 10-yearold child and is treated as such. Even though medically she has been through a great deal in her life, she remains a happy, intelligent, compassionate and loving little girl. We are incredibly proud of her and marvel at her outlook on life.

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OUR GRANDSON JOSHUA by Nana and Grandpa Hage The most important people in our lives are our children and grandchildren. When an unexpected life-threatening experience occurs to a grandchild, grandparents feel the pain and anguish twofold, deep in our hearts. We suffer for both our child and our grandchild. In August 2010 our daughter gave birth to our beautiful grandson, Joshua. Before his birth, he suffered devastating complications, placing both our daughter’s and our grandson’s lives in danger. The doctors told us had she not gone to the hospital when she did, Joshua would have died that night and our daughter could

have died as well. In that moment we could have lost two of our family members. Our grandson suffered a stroke at birth caused by a life-threatening blood disorder. The effects of the birth complications have been felt many months later eventually delivering to all of us the greatest challenges we have faced thus far in our family. As we look back over the past three and a half years, we have witnessed the power of commitment, faith and love. In spite of the setbacks we all have found courage, hope and vitality to keep life moving forward in a positive direction.

A GRANDMA’S PRAYER by Betty Killebrew God send an angel to stand beside My little grandchild’s bed; Please help him to get better And relieve our fear and dread.

So keep him safe and help him heal and let him once more thrive, and I will praise and thank you As long as I’m alive.

His days on earth have not been long; But in just that little space, Every heart has come to have For him a special place.

INSPIRED BY STRENGTH – A FRIENDS PERSPECTIVE by Nicole Sabo I was one of the first people she told when she found out she was pregnant with their first child. I remember her enjoying every minute of her pregnancy, never having morning sickness and always having rosy cheeks and the glow that people talk about. It was a joy to watch her throughout both pregnancies. When their first daughter was born, she was beautiful, with porcelain skin and big blue eyes. Over the last few years, I’ve watched her grow into the sweet-natured, smiling young girl who has the most exuberant laughter. Then, almost two years ago came their sweet second daughter, with gorgeous red, curly hair and a fiery temper to match. She is so observant and I love watching her watch everything else in the world. It’s amazing to see her expressions when seeing new things. It’s been a long, hard road for the entire family and we’ve had many conversations and shared tears over

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the battles that both girls have faced and are going to face throughout their lives. But I’ve always been in awe over how this couple always saw the light at the end of the tunnel. Instead of looking at what could be or what could happen, they embrace each challenge and have always had the best attitude about how they can help their girls now and what they can do to give their girls the best possible outcome and best future possible.

I’ve always been in awe over how this couple always saw the light at the end of the tunnel. I see how many obstacles both girls have already overcome and I am reminded each day of how lucky I am to be a part of their lives. To watch them both grow stronger and get past each little (or big) hurdle is always a reason to celebrate.

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A LETTER TO SANTA The true meaning of friendship and Christmas is captured in a note to Santa from eight-year-old Grace Metcalfe.

A VERY BRAVE LITTLE BOY by Martha Careiro

In August, when we received the call that a new little member of our family had come into the world, we were oblivious to what was about to happen. I remember sitting next to my very ill 87-year-old mother when my nephew told me the baby was very ill and could possibly die. I prayed and asked God to do what he thought was best for both of them. We buried my mother four days later, and 28 months later, our big boy is thriving. He is a child with so much life in his little body and so much drive. He is making great progress and rarely do we see him give up. He is such a happy little boy, and he probably has no idea what is happening.

He has so much to give and we are elated that he is doing so well. We have learned so much by watching him and his parents. It is hard to watch him struggle at times, and I know that it is selfish to be thinking of our feelings at this time and not his. He is such an inspiration for us. It’s easy for us to say, “I can only imagine what it must be like,” but there is no imagination that can prepare you for what it is like for those children and their parents. It is a difficult journey and you truly can’t understand unless you are walking in their shoes. He is a champion and we love him and are so proud. One day he will walk tall. He is a hero to us.

MY PATIENTS, MY HEROES – A NURSE’S STORY by Stacey Hall My name is Stacey and I’ve been a pediatric nurse at the Stollery Children’s Hospital for four years. In that time, I have seen countless moments of joy, pain, weakness and strength in patients and parents while they learn to cope with a disease or diagnosis they have just received. In being a nurse to patients who have undergone brain or spinal cord surgery, I have witnessed miraculous moments shared with patients and their parents, and I have comforted others who were still hoping for a miracle. When a parent is told their child has a tumour or a stroke, or has developed a life-threatening illness or needs emergency surgery, their entire universe stops moving. It is the responsibility of the health care team to address, explain, inform and teach the patient and their family everything they can to aid in the frightening journey that lies ahead. In some instances, 138

the journey is brief, manageable and may become a distant memory. For others, the disease or diagnosis may change the lives of each family member, testing their strength and spirit and requiring an army of support and hope. As a nurse, I generally witness only a fraction of this journey while the patient is hospitalized, treated and released. Some of the patients or families I will never see again, while others return and their difficult journey continues. Volunteering as a camp counsellor at the Pediatric Neurosurgery Summer Camps, I’ve had the opportunity to reconnect with these patients, watching them thrive with kids who have been through the same struggles, some that they conquer while other struggles continue. All of them are heroes in my eyes. The Compass

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THE CHOICE by Julie Gunderson

I was there when my sister’s water broke when she was pregnant with Olivia. We were camping in Nordegg at a remote site and Brett was off fishing. I was there when the doctors told Wendy and Brett that Olivia had a brain bleed and would need surgery. I was there when they found out Olivia needed a shunt and would likely need it the rest of her life. I was there when everything seemed so normal and Olivia was growing up like all other kids becoming a little independent person and big sister. I was there when Wendy phoned me to tell me something was very wrong with Olivia at age nine, and that they were taking out part of her skull. From Calgary, I drove up to Edmonton with my kids to make sure she knew I would always be there. I was there when Olivia was so sick during the Christmas of 2012, I changed our usual Christmas plans to make sure my family, my husband and kids could be there too. My husband has taken to coming with me at these critical moments. We were there two weeks ago when Olivia began her current battle with her illness. As we drove to get something at a local store, my sister told me that it would be strange for her to go through this without me. I don’t think I realized that being there meant so much to her as I know she would have moved mountains for me if the tables were turned. I have often taken on the role of director when I could not be there for Wendy and Brett in person, telling my Mom what she needed to do, and instructing my Dad on when to talk and when to listen. I was there when Wendy and Brett needed me and I will always be there for them. There is no other choice. Choice is a funny thing. Wendy and Brett did not choose for Olivia to be a sick kid – the situation chose them. Instead of allowing the situation to totally define their family, Wendy and Brett chose to change the world with the Neurosurgery Kids Fund. They chose to allow their friends and family to be a part of this transformation, for which I am very grateful. They

STANDING UP FOR LOVE by Arianne Piojo

Although I am not able to comprehend what it is like to be in any of your shoes, I want you all to know that each one of you inspires me, and that each of your kids is so special to me. Whether I have had them as a patient, had the chance to meet them at Camp Everest or a Neurosurgery Kids Fund event, or have heard their story, your child has taught me true courage, bravery, strength, grace and patience. Their ability to smile right after having an IV or some painful procedure is mind-boggling to me. Their selflessness to ask, “How are you?” or “Are you ok? Why

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chose to share Olivia’s story with the world in hopes it helps someone else. They chose hope, which makes me incredibly proud of them both. It is when I look at their choice to hope for more for Olivia and their family that I realize there is no room in my head for selfish thoughts about how Olivia’s illness has affected my normal life. I now choose to look forward to the day when Olivia runs in the backyard with my kids like she did just a few short years ago.

With all the anger, helplessness, worry and guilt this unexpected choice has brought, it also brought joy. With all the anger, helplessness, worry and guilt this unexpected choice has brought, it also brought joy. Without Olivia, there would be no Camp Everest where an awkward engineer like me learns the pure joy of playing with “medical kids.” (I have to admit, by the first year, I thought engineering a pipeline would’ve been easier.) Olivia has allowed me to develop the Hope Stones program, which brings me endless joy. Not only do I get to count the beads with my six-year-old daughter, I get the notes of thanks from parents who tell me how their child has strung the beads together and the joy this has brought their family. It has allowed me to celebrate the joy of Olivia’s good days and weeks and months with Wendy and Brett, those days when she is a stubborn, attitude-filled 10-year-old child. I am sure there will be more of these days in our near future. A chronically ill child affects all members of a family, both immediate and extended. I have learned that this comes with a range of emotions and thoughts – some good and some bad. But most of all it comes with deciding if you are in for the long haul, and if you are, choosing to always be there for support in both times of worry and times of joy.

are you crying?” right after they wake up from a major surgery makes me wonder who’s taking care of whom. Their carefree nature of walking to the beach (the beach inside the Stollery, that is) with lines attached to them and an IV pole on each side is crazy to me and makes me smile now as I picture it. Their ability to show love either by holding your hand or giving you some cuddles when their head is pounding so much they can barely breathe is truly inspiring. I believe that all of these things mostly come from having amazing parents like you.

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Stories of bereavement Whether the death of a child was sudden or if it came after a long illness or injury, it is a tremendously difficult situation to deal with. Due to the complexity of neurosurgical conditions, death is a devastating reality that we need to address. This section offers helpful suggestions and resources, words of wisdom and stories. This section was written by Melinda Elgot and Trina McCartney in loving memory of Naomi and Katelyn and is dedicated to all the beautiful angels of pediatric neurosurgery.

PREPARING FOR LAST HOURS WITH CHILD – HOSPITAL DEATH A Parent’s Perspective Each moment spent with a dying child is truly sacred. Stare at the beautiful features of their delicate face, tracing it endlessly with the stroke of a finger, getting lost in the smell of their hair and skin, feeling their gentle beat of their heart and their breath on your cheek. The following list can be used by families and/or health care professionals in creating a peaceful and sacred space for families with a dying child. • Contact palliative care • Contact hospital photographer, Now I Lay Me Down to Sleep • Arrange for hospital chaplin at the request of family • Request a nurse with whom your family has a relationship • A nurse may be able to provide funeral home options • Have a family member or friend who will act as a primary contact responsible for: - contacting those to be in attendance at hospital - bringing anything special for the child to the hospital (christening gown, special toy, clothing, etc.) - contacting the religious representative of their choice - contacting the funeral home - contacting the photographer of their choice • Arrange for private room if available: - request a pull-out double hide-a-bed and a few chairs - pull out and make a bed, including blankets and pillow - place Stollery bears on bed - place and turn on a star machine in the room

BOOKS ABOUT GRIEF

There are a wide variety of books available on the market for families when dealing with the topic of grief. We approached a few of the families in our neurosurgical community and asked them to share a few they found helpful. • Grief for a Season, by Mildred Tengom. This book guides those who are grieving at their own pace. It is a faith-based book, with many quotes from scriptures and hymns. 140

- ensure there are boxes of good tissue in room - ensure there is a CD player with music playing - have soft lighting (lamps) in room - set out quiet activities – colouring books, crayons, playdough for siblings/children in attendance (possibly have bags pre-made) • Arrange for separate space for extended family and friends • Ensure privacy is available when requested or needed • Limit monitoring to essentials (turn off beeping monitors) • Provide warm blankets for the child • Provide water for the child and their family

After the child has passed: • Allow time for the family to be alone holding their child for as long as appropriate • Assist parents in bathing and or dressing child • Take footprint/handprint impressions (moulds) and ink fingerprint/handprint/footprint • Provide clothing for burial/cremation if parents have nothing. Ask parents if they would like clothing back or to be buried/cremated with child. Make note of this on funeral home documentation. • Ask if they would like to leave anything else to be buried with child • Give memorial jewelry info (Silver Soul) • Ensure family has all of their child’s personal belonging including hope stones, name tags, cards, gifts with them when they leave • Arrange for a porter to help with family’s personal items

• When the Bough Breaks, by Judith Bernstein. • When Bad Things Happen to Good People, by Rabbi Harold Kushner • The Tunnel and The Light, by Elizabeth KublerRoss. This book is compiled from the many lectures given by Kubler-Ross. • In Lieu of Flowers, a Conversation for the Living, by Nancy Cobb. • Man’s Search For Meaning, by Viktor E. Frankl. The Compass

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This tells how Viktor Frankl endured years of unspeakable horror in Nazi death camps and how he created his theory of man’s search for meaning under horrible circumstances. • Cleo, the Cat Who Mended a Family, by Helen Brown. This is a true story of a mother’s grief. Along with the very sad and tragic moments in this book, there are some humourous moments as well.

HELPFUL WEBSITES

There are countless resources to help with grieving. Here are a few suggestions: Photography: • Now I Lay Me Down to Sleep nowilaymedowntosleep.org A quote from the this organization’s website that beautifully addresses photography and death: “You do not have to look at the photographs right away, but they will be there when and if you are ready. You cannot take this moment back. Remembrance photography is a very important step in the healing process. Photographs are one of the most precious and tangible mementos that a parent can have, showing the love and bond that was given and shared with their baby. These portraits will last for generations, and will honour and remember a tiny life that is forever loved and cherished.” • Tiny Light Foundation, a photographic charity thetinylight.com • Memorial Jewelry, memorial jewelry • Silver Souls, silversoul.ca, (403) 581-8877 Grief Support for Families: • Sesame Street Sesame Street has created a very resourceful website to help children learn to cope with grief. The site offers child friendly downloadable books, activities and guides. Visit sesamestreet.org and navigate to “toolkits,” where you’ll find a section about grief.

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• Any books by Mitch Albom: - Tuesdays with Morrie - The Five People you Meet in Heaven - For One More Day • Why are the Casseroles Always Tuna? A Loving Look at the Lighter Side of Grief, by Darcie D. Sims

Other helpful sites: • grievingparents.ca • pilgrimshospice.com • yogaforgriefsupport.com Palliative Care/Needs: • Meal Train Meal Train is focused on the act of organizing meal giving around significant life events. mealtrain.com Virtual Hospice: • Information and support on palliative and end of life care, loss and grief. virtualhospice.ca Baby Loss: • A walk that honours the little lives lost. walktoremember.ca “One who has journeyed in a strange land cannot return unchanged.” -C.S. Lewis

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• Stories of Bereavement •

There are moments that contribute to the patchwork of our lives, both the good and the bad. Then there are those moments that define who we are and what we are made of. Some have the ability to take hold of us, chew us up, and spit us out in the cold, dark wilderness leaving us feeling numb, shocked, disoriented and lost. Some even leave us struggling to breathe. April 11, 2013 was that kind of moment. It was lifealtering. It took place inside that dimly lit exam room where I was about to have what I thought would be a normal, unremarkable, follow-up 30-week ultrasound to check on our baby’s slightly enlarged kidneys. There I was, blissfully awaiting a sneak peek of our third littlest love growing inside me. Instead I heard what every parent should go a lifetime without hearing: “We have found what looks like a major bleed inside your baby’s brain.” There I was, alone, hearing those words echoing in my head, scared beyond belief. Panic-stricken, I called my husband, only able to cry. I still don’t remember the words I said to him. From that moment on, our world spiraled out of control in disbelief and fear. Even today, I still can’t put those feelings into words. Our world became that of ultrasounds, MRIs, blood work, fetal echoes and a team of specialists. Consultation upon consultation. Tears upon tears. Disbelief upon disbelief. I knew this could happen, but not to us. Not to me. Not to our baby. Our daughter’s diagnosis was worse than we could imagine: a massive intracranial hemorrhage, the cause of which was unknown. Severe disabilities, hemiparalysis, hospitals, specialists, rehabilitation. We were asked if we knew anyone with special needs. No, we didn’t. We were alone. Weeks passed and we moved into our new reality. We read. We asked questions. We researched. We prayed. We became hopeful. We prepared ourselves for what everyone called the new normal. We were loved, supported and lifted with strength from our two children, our families our friends and our little baby growing inside. We were hoping for the best, whatever that was and we would take on whatever life had in store for us. Then came May 23, 2013, the day of mixed emotions, the day we would finally get to meet our daughter, this tiny being of uncertainty, the one who would change not only our lives but the lives of so many around us, the one who would teach us more than we ever thought possible. Katelyn was born via c-section and she surprised us all. She needed no medical intervention. Even with her damaged brain, she was utterly perfect. As an outsider, you would have never known there was anything wrong. It was as if the doctors had misdiagnosed her. That was all I was praying for. We had four days of this amazing bliss of uncertainty. We were so incredibly hopeful. The doctors were unfortunately not wrong. The 142

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KATELYN by Trina McCartney

“What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes part of us.” - Helen Keller

days that followed were both more awful and more wonderful than I could have ever imagined. Ironically enough, those moments played together in chorus. They were full of medical procedures and surgeries, scans, xrays, tubes, lines, boluses, transfusions and more words I wish I still didn’t know. There were sleepless nights and endless tears, fear and helplessness. But they were also full of light and love. We held our sweet baby, had visits from our older kids, and received caring notes, thoughtful gestures, loving embraces, meals, music in the healing garden and a shoulder to cry on. We journeyed alongside nurses, doctors , family and friends, always feeling wrapped in their kindness and compassion. Those days taught me more about fortitude, faith, love and trust than ever before. On May 30, after two days of what seemed like a downhill battle we decided that there would be no more touches of intervention, only touches of love for our baby girl. On May 31, our brave daughter, Katelyn, full of so much grace, ended her battle and took her last The Compass

• Stories of Bereavement •

breaths in our arms in the Stollery Children’s Hospital surrounded by family and friends under the starry night sky. Our hearts shattered for the loss of possibility, the dreams, and the physical touch of her tiny body that we would never feel again. Her last moments, although incredibly heartbreaking, were also so peaceful and beautiful. It was a night filled with so much love

you could feel it move throughout the room. I will be eternally grateful for those eight days we had with our youngest daughter. And although that wilderness that we were once so afraid of is vastly different, yet just as unknown and frightening, it is because of her that we have the courage to move through it.

MY LITTLE GIRL BY by Will McCartney In memory of our precious daughter, Katelyn Marie McCartney May 23, 2013 – May 31, 2013 Forever remembered, forever missed

Our daughter Katelyn had a total of two brain surgeries, both on the same day. The first filled with so much hope, the second with so much fear. Katelyn had been diagnosed at 30 weeks in utero with a major bleed in her brain. The next seven weeks leading up to her birth were full of ultrasounds and difficult conversations with neurosurgeons and neurologists. Up until then I didn’t know there was a difference between a neurologist and a neurosurgeon. They told us that Katelyn would live, that she would likely need a shunt put in to keep the pressure off the good side of her brain – a “minor” neurosurgery. She would have problems with the right side of her body and her ability to learn would be significantly affected. As a father and a husband I was crushed – crushed from hearing that my child, my little girl, was going to have a harder life than anyone should have. From morning to night I would have both fear and disappointment in the pit of my stomach. Fear of the unknown and what may come, and disappointment for what could have been for my little girl. I started making plans. There is someone in the U.S. whose son has cerebral palsy and is quadriplegic. The The Compass

father swims, bikes and runs though an entire ironman all while carrying his adult son. That was going to be me. I was going to do everything physically possible to give my daughter the best life I possibly could. Yet the fear of the unknown remained. What multiplied my sorrow a thousand times was watching my wife go through this all and being totally unable to change any of it for her. At that point in our lives I was working and she had been staying at home with our other two kids. We both knew without saying it that she would shoulder most of the burden of caring for Katelyn, along with most of the emotional burden as well. Within a week of learning about Katelyn’s condition I had to go back to work, to be thankfully distracted by the day to day and the needs of a busy career. My wife was carrying this tiny, sacred little combination of us both, feeling her kick all the time, being constantly reminded of the ironic mix of beauty and fear that lie ahead. I would come home from work and almost immediately feel guilty for having been away for the day, to give the fear a back seat for a few hours, while instead my wife had been bearing the constant reminder all day. I was brought to tears more than once just thinking about what my wife was going through. On May 23, 2013, Katelyn was born and was doing very well. Based on a MRI, the neurosurgeons highly recommended the shunt. This first surgery held such hope – she was looking great and had exceeded the expectations of doctors. The fear of the unknown found us only a few hours after this surgery as her head swelled and she nearly died right there in the NICU. A second emergency surgery was done. I will never forget looking at the permission form and bursting into tears when I read the word “craniotomy.” On May 31, we lost Katelyn. The weight was unbearable, like a crushing stone of a hundred emotions. While it may have been heavy for me, for my wife it was even more so. The loss of Katelyn was so much more physical for her, having just given birth, than it was for me. I took nearly four months off work to take care of my 143

• Stories of Bereavement •

wife and kids, and myself. It was one of the best decisions I have ever made as it helped us to begin healing as a family, and took the load of daily life off my wife, at least for a while. There will always be emptiness in our lives,

something missing without her here. For myself, I look at my own death in a different way. With any luck I will have a long healthy life, and when I do leave this earth I know I will on my way to see Katelyn again.

A SWEET ANGEL by Melinda Elgot In loving memory of our precious daughter Naomi Kathryne Elgot September 7, 2004 - June 25, 2013. You are missed every moment, remembered every minute and loved with every beat of our hearts. Though palliative care was a portion of our journey with our daughter’s brain tumours, part of our coping began at her diagnosis. Through every step of the journey, openness and honesty with our daughter Naomi and our other children has been paramount. Though she was only five at the time of diagnosis, we always shared with her what was happening, gave her choices when possible and allowed her to have a voice in her own care. As our other children were three and one, we shared information with them in an age-appropriate language and amount. Never did they feel excluded from the process and when it came time to enter palliative care, we had an honest and tearful family talk. Honesty dispelled much of the fear. These talks were often revisited on a daily basis as our daughter’s illness progressed, but every time we answered honestly, sometimes through tears, but always truth. You know your children better than anyone and you will know how to speak to them. Some purely practical things we did were to label the lids of medications (pain, morning, sleep, etc.), bring daily life aids in to the home (suction, commode, bath lift, etc.) and put out weekly emails about her condition to our team of doctors and nurses. We tried to have no daily expectations, as each day was truly a new adventure. Savour the good days, breathe through the tough, and make sure you take care of yourself. We also brought on adult care to help out with our other children a few hours a day. This was usually the supper hour, when life gets busier for us all. This needs

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to be someone that can walk in without judgment and walk out still loving you all, even after seeing you at your worst, and be honest about your needs. We put out an email saying that our needs may change on a minute-to-minute basis, so if you get to our door with a meal, hug or help and we can’t come or accept, know we still love and appreciate you. Lastly, one thing we said many times was that we daily went to the graveyard, but we didn’t live there. Be prepared for the worst, but don’t camp there. We sat down one night for a 45-minute rapid-fire conversation and planned the funeral. We did this so we could live and enjoy the days we had. It is difficult to pray for a miracle while planning a funeral, but it is possible and we were freer for it. Blessings to you all on this difficult journey. “How lucky I am to have something that makes saying goodbye so hard.” - A.A. Milne

The Compass

• Stories of Bereavement •

THE INVISIBLE BOX by Melinda Elgot

Six days before Naomi passed away, Victor and I gathered our other little ones around the table to share our feelings and tell them that Naomi would soon die. We wanted to again ask them about their preference for involvement in her end stages of life, and include them in the process as much as we were able. They both asked if they could please be with her when she passed and then my beautiful boy asked if he could give her a present to take to heaven with her. I asked him what he would like to give, and he said a colouring book. “I thank my God every time I remember you.” Philippians 1:3

Shepherding little hearts and minds is so tough, and I felt it very important to make sure they were aware that nothing physical could be taken from this earth, so we began to discuss what sort of things she could take with her when she left us. There was mention of love, hugs, prayers and the like, but then an idea came to me. There was a peace that entered my mind as the emotions in the room swelled and my heart rolled down my cheeks. They need to have something to give. So out of my mouth tumbled these words; “Should we make Naomi an invisible box full of all of her favourite things?” The question only hung for seconds in the air before it was answered with a resounding “Yes” from both our kids. So, at that table, full of sadness and questions, four hearts and eight hands fashioned an invisible box. The invisible box: we gave it sides and a bottom, making sure we all knew where we needed to place the treasures we would send with her. Then the fun began. We took turns making some of her favourite things to be sure she would have them in heaven. DJ offered a colouring book and forever-sharp pencil crayons.

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Phoebe made sushi and coloured her a picture. We all laughed and joy burst through as we filled the box with all we could dream would bring a smile to her face. It was filled to the brim with gifts of every kind, as we blew kisses and squeezed as much love in as we could. The sweetness of my almost five-year-old princess brushing imaginary tears from her cheeks in to the box was enough to cause my husband and I to pause, hands clasped in an offering of thanks as we watched our children pour their love into their sister. We were about to seal the box when we came to a sudden stop. We had neglected to include Puppy. He is a well-loved, well-travelled stuffed dog of Naomi’s and they were inseparable. So with trembling hands, I sewed a body, each hand around the table taking a turn to “fill” him with stuffing, and then we gently sewed him shut. DJ “made” a collar to match the predecessor and we all lowered him in to the box filled with hope. As we sealed it with kisses and hugs my heart burst with love, not only for the child clinging to life in our room, or the two sitting full of life and joy before me, but for the husband that sat beside me, breaking the waves of the storm. We four carried that invisible box quietly up the stairs as not to wake our dearly loved, and we placed it under the bed, knowing we could send it with her when she slipped from this world. Six days later, when Naomi breathed her last breath, Daniel and Phoebe knelt beside her bed, pulled out the box, kissed her gently and gave her the most precious gift they had to give. The invisible box filled with the love, born from the family she was blessed with and that was blessed with her. To this day they talk of what they “sent with their big sister” to heaven, and with it the knowing that they showed her she was loved. And those moments, and those memories, though some may sting, are some of those I count most precious.

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Notes

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The Compass

CHAPTER 6:

Additional Resources

Illustration by MONIKA MELNYCHUK

Chapter 6: Additional Resources 149

SECTION 6.1: ACKNOWLEDGEMENTS

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SECTION 6.2: GLOSSARY OF TERMS

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SECTION 6.3: OLIVIA’S JOURNEY

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SECTION 6.4: MAPS OF THE STOLLERY CHILDREN’S HOSPITAL

CHAPTER 6:

Additional Resources SECTION 6.1 – ACKNOWLEDGEMENTS

A doctor once told me, “Your son will not live an ordinary life.” He was right: my son’s life is nothing less than extraordinary. Thank you to Jacob and Joshua, for whom I’m inspired to be the best I can be. You are truly my two angels. Thank you to my husband, Danny, from whom I’ve received unconditional love and great strength. To my parents, Kim and Annette, for not only walking every step of this difficult journey with me, but also for carrying me through the hardest times. Thank you to my fatherin-law, Manuel, for your quiet comfort and constant support, and to my family, my Portuguese family, and my friends: thank you from the bottom of my heart for your support and love. To my best friends, Carla, Jamie, Jill, Stacey and my sister Tammy – words will never be

MELODY WILLIER

To the life that I never expected to live, thank you! I am a stronger person and more importantly, it gave me a voice and showed me how to use it. Thank you to my husband – our journey has made us stronger than ever, which I am grateful for. You allowed me to discover the things that I did not know I loved in life. You’re my best friend and I wouldn’t want to walk this journey with anyone else. Thank you to all our family and friends for the endless support, it is truly amazing and we are so grateful for you all. Neil, Maggie, Bruce, Ann and all of our siblings, thank you. We can never repay you for all the love, support and help that you provide to us on a daily basis, your unconditional love is like no other. To Brandy, for rarely saying no, and for being more than a sister but a friend. To the handful of people in my life that will cry with me, laugh with me and just let me talk when I need it most

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enough. To Chris, Julie and the Dirty Birds for honouring my hero, Joshua, and for helping all the children of neurosurgery. Thanks to Melody for being a part of this very special book every step of the way and sharing your passion, and to Wendy, who led my family with compassion and knowledge through the hardest time in our lives and then gave me her hand in friendship and inspired me to become involved with Neurosurgery Kids Fund. I am forever in your debt.

with no judging, thank you, you know who you are. Melissa and Wendy, I am not sure what my life with be like without you. Thank you for yesterday, today and tomorrow. A special thank you to my mother Rose; you stand by me, travel across Canada with me so your girls can have the therapy they need, you look after them so we can have a break and most of all, you are a shining example of the mother I want to be. Thank you will never be enough. Most importantly, thank you to my heroes, my inspiration to be a better person and to make a difference in this world, my girls. I love you more than you’ll ever know.

Ryan Girard

MELISSA DA SILVA, B.Sc., RN

Ryan Girard

This book is a labour of love, and it wouldn’t be possible without the invaluable contributions of so many.

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WENDY BEAUDOIN, NP, PhD

I would like to thank my brother, Dave, and parents, Judy and Doug, who have always believed that I can achieve more than I thought possible. To my best friend and sister, Julie, who has been my sounding board for so many ideas and who ran with the Hope Stones project when I had no energy left to make it a reality. Thank you to Mike, Natalka, Tory and Allison, who stepped up to fill such a huge void. To Tarah, Carolyn, Heidi, Russ and many others for your friendship. To Stacey, Grant, Arianne, Lauren, Jeff, Chris, Kristen, Tina and Jon, who didn’t hesitate to create the magic that is Camp Everest and changed countless children’s lives. Thank you to Melody for your dedication to this book, and to everyone else who has contributed. A very special thank you to Melissa, who is the heart and soul of this book, truly embracing her strength

THANK YOU

This book has been a collaborative effort with valuable contributions from so many. We would like to thank Tammy Samoil, Deanna Schulz and Lindsay Lord for offering your support, stories and experience to make this book as resourceful as possible. Thank you to Melinda Elgot, Trina and Will McCartney for finding the strength to share your stories so other parents can find comfort in them. May this book be another part of the legacy in honour of your beautiful angels, Naomi and Katelyn. Thank you Carla Rodych, Soula Milonas, Diane Dale, Ashley Dale, Denean Dale, Shannon Schmidt, Ella Schmidt, Jacob Da Silva, Nicole Sabo, Sam Lord, Jake Beaudoin, Martha Carreiro, Kim and Annette Hage, Grace Metcalfe, Stacey Hall, Jen Litzenberg, Julie Gunderson, Judy and Doug Mercer, Kelly Smart, Arianne Piojo, Trevor Bosma, Andrew Powell, Danny Da Silva and Kaela Hendra for sharing your inspiring stories of courage and hope. These stories are the heart of this book. Thank you to Monica Sliwa, registered psychologist, for your review of the section on coping. Thanks to Mary Bowers and Jessica Bosma for sharing your knowledge about schooling. Thank you to Emily Perl Kingsley and Ellen Stumbo for giving us permission to use your poetry in this book. Thank you Doreen Hernandez, Pamela Murray and Dr. Jeff Pugh for sharing your expertise. Thank you Lillian Mah for allowing us to use the visual schedule for surgery. It is a great resource for children. Thank you Mike Beaudoin for your dedication to ensuring this book is held to the highest standard. Thanks to the amazing team at Venture Publishing – Ruth Kelly, Andrea deBoer, Mifi Purvis, Robbie Jeffrey, Charles Burke and Betty Feniak Smith – for going above and beyond any expectations we had. And thanks you to Aaron Vaage, Lori Flink and 150

to bring hope for the future for so many who will follow. Josh and Jacob are very lucky boys. To Aaron, Reade and Viv, who made this crazy dream a reality, even if you won’t address me as “Supreme Commander.” Thank you to my unbelievably patient and understanding husband, Brett, who has never given me grief for working on this and other projects late into the night and on weekends. Thank you Mackenzie and Jake, for being two of the very best kids in the entire world, and to my Olivia, who is ultimately my inspiration for all of this.

Reade Beaudoin for your constant support. Thank you to the Stollery Children’s Hospital Foundation, who took the Neurosurgery Kids Fund under their wings and helped us soar. Together, we will continue to provide the best care for the sick children of Alberta. To the therapists, nurses and hospital staff who care for our children around the clock, on weekends and holidays – thank you for the sacrifices you make to ensure our children receive the best care possible. To the neurosurgical team, thank you for your superior care of our children. During the darkest and most frightening time in our lives, we are blessed to hand our children over to a medical team of knowledgeable, brilliant and compassionate individuals. Thank you to Dr. Mehta for your contribution of medical information, detailed review and writing the foreword for this book. Your contribution to this book and the Neurosurgery Kids Fund is invaluable. Thank you to the organizers of our annual fundraisers Red Carpet for Kids, Stand Up for Love, Dirtybird’s Charity Hockey Tournament, to all lemonade stands, donations in lieu of birthday gifts, company or personal fundraisers and personal donators. Thank you for your commitment in improving care for neurosurgical patients and their families by supporting the Neurosurgery Kids Fund. Our deepest gratitude to The Building Trades of Alberta Charitable Foundation for their deep vested interest in building a stronger and more supportive community for our patients and family. Your support and sponsorship of this book will make a meaningful difference to families traveling the difficult journey of pediatric neurosurgery. Thank you to the 75,000 workers, 21 unions and The Building Trades Charitable Foundation for your support.

The Compass

Ryan Girard

• Acknowledgements •

The Compass is proudly supported by:

NEUROSURGERY KIDS FUND

The Neurosurgery Kids Fund is committed to enriching the lives of children and the families of children who have undergone brain or spinal surgery at The Stollery Children’s Hospital. The Neurosurgery Kids Fund raises all its own funds and manages its own initiatives. A few of the fund’s programs and initiatives include: • Camp Everest is a unique weekend camp experience for children seven to 14 years old who have undergone brain or spine surgery, injury or conditions. • Family events are fun-filled events bringing our families together. • Family support bags are filled with items intended to provide support during initial diagnosis. • Emergency care bags include a variety of items, including toiletries for families that come in when their children have emergent or unexpected surgery. • Bereavement support bags • Hope Stones is a program that helps tell a child’s medical journey through the accumulation of beads. • Little Everest is a day camp that is aimed at our patients younger than six years old and their families. • In-hospital coffee program

• Memorial Garden • Parent/caregiver/sibling support group is a support program that meets up to four times a year in a laidback and fun atmosphere. • Research/Alberta Pediatric Neurosurgical Database supports research that is essential to best practices in providing children with the best possible treatment. Research is a key component for gaining knowledge and providing medical teams with the information they need to establish new guidelines. • Website-Parent Support/Physician Broadcasts is a cyber-home for our patients, families and medical staff to come together and gain knowledge.

Notes

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SECTION 6.2 – GLOSSARY OF TERMS As much as we love our doctors and nurses, sometimes we wish they’d speak in a language we can understand. We compiled a list of common words used in the neurosurgical world and, with the assistance of the medical team, defined them in a straightforward and practical way. Analgesic - pain medication Atrium - one of the two chambers of the heart Bulb reservoir - a small dome on most shunt valves. The doctor can use the bulb to test the condition of the shunt Burr hole - a procedure where a hole is drilled into the skull exposing dura mater Cerebral spinal fluid - clear fluid produced by the brain that surrounds the brain and spinal cord CT scan – use of a tube-like machine that takes pictures of the insides. Sometimes, a contrast dye is used to get better pictures Clear fluids - fluids that you can see through, such as water or apple juice. Fluids like milk, formula and orange juice are not clear fluids Congenital - a condition present since birth Craniotomy - removal of part of the skull to expose brain Cyst - a benign sac or closed cavity that is filled with fluid. Most cysts in the brain are filled with CSF Downward gaze - the ability to look downward. The inability to look downward is often a sign of increased pressure in the brain EEG - brain cells talk to each other by creating small electrical impulses. The EEG measures these impulses or the electrical activity of the brain Endoscope - a small camera used during surgery that allows the doctor to see inside the body as the picture shows up on a television monitor EVD/external ventricular drainage - a drainage system that is used when a shunt is infected. The CSF drains to a collection bag on the outside of the body Fontanelle – also called the “soft spot,” it is an opening between the sutures of the skull in infants or young children Hydrocephalus – also called “water on the brain,” it is an increased amount of fluid around the brain. Shunts are used if there are problems with the fluid and pressure

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Intracranial pressure (ICP) – pressure in the skull thus in the brain and fluid ICP monitor - placed in the skull, by a neurosurgeon, it monitors pressure in the brain Intubation - insertion of a tube in the mouth and throat to help with breathing Intraventricular hemorrhage (IVH) - a bleed within the ventricular system Lumbar puncture - also called a “spinal tap,” the doctor will put a needle in lower spine (lumbar area) and take a sample of the cerebral spinal fluid for testing. This is a very common procedure MRI - a scan that uses magnets and looks very closely at the area it is investigating. It is a loud machine and your child will be given ear protection There are two types of MRI scans: ast Head MRI - scan takes about 30 seconds and ➊F does not require sedation ➋F ull MRI - scan can take between 30 and 60 minutes. Your child will most likely be sedated for these scans. If your child has a programmable shunt, the doctor must be available afterwards to check the setting as the scan can sometimes cause changes NPO (Nil per os) - Nothing by mouth is a medical term used to tell you that your child may not eat or drink prior to surgery. If your child requires medication, discuss this with the doctor about how and when to administor the medication Papilledema - swelling of the optic nerve caused by increased pressure Seizure - an episode of disturbed brain activity Shunt - a drain that is inserted to help drain fluid accumulation in the brain Stenosis - a blockage Stroke - damage to the brain caused either by a blood clot or from a bleed in the brain (hemorrhagic)

The Compass

Monika Melnychuk

SECTION 6.3 – OLIVIA’S JOURNEY

“Olivia’s Journey” features excerpts from Wendy Beaudoin’s blog, which details her experiences with her daughter Olivia as she undergoes surgery. You can read more and follow along at facebook.com/neurosurgerykids

DECEMBER 31, 2013

Tags: anger, other children, what if? As soon as I opened my eyes this morning, I was in a bad mood. I felt irritable and annoyed and hadn’t even gotten out of bed. With a million little things to do to get ready for a prolonged stay in the hospital, I decided I would spend quality time with my other two kids, Kenzie (nine years old) and Jake (six years old) and get some errands done. Right now, Olivia can’t stand for more than about five minutes without getting a blinding headache. By 10 minutes, her brain sinks into the top of her spinal cord and makes her neck hurt and her hands so weak she can’t hold her juice box. It would be impossible to take her shopping, so once again I call on my mom to come over and stay with her while we head out. We’re at the mall when we bump into an old friend. The conversations ends with her saying, “Well good luck with everything. I hope she comes through it OK.” I walk away and hear Kenzie quietly say, “What does she mean ‘I hope she comes through it OK’? It’s not like she’s going to die…” I see her eyes well up with tears as she looks down and it stops me in my tracks. I give her a hug and say, “She just means she hopes she isn’t in too much pain and that we’re home quickly.” She swallows her tears and says, “Well why don’t people just say ‘good luck’ then?” When I get home, I get a text from my husband Brett who works out of town during the week. He has been working a lot so he can take off as much time as he needs in January. His plan is to work until Sunday so he can come to her pre-admission visit Monday and then be off for the next few weeks as necessary. He asks me a simple question about what we’re doing on Sunday, and I fire back a text that is clearly designed to start a fight. The Compass

I just want to be mad today and I can’t seem to find anyone to be mad at. I am mad that I can’t work at the job that I love. I am mad that my neighbour runs over to see how Liv is doing and says, “I don’t know how you do it,” as if I actually have a choice in the matter. I’m mad she was born 16 weeks premature, and I am tired of being the mom of a sick child. He sends me a text back, clearly confused as to why I’m freaking out over something simple. We text back and forth and I send my last text which basically says, “Do whatever you want. You’re going to anyway.” There is a pause in the texting and a couple minutes later my phone rings. I stare at it, wanting to press the decline button, but I answer it anyway. “You OK?” he asks. My eyes fill up with tears and I quickly head into our office and close the doors. I was going to say something like, “I need to get groceries and you could help clean the house on Sunday,” but – surprising even me – I quietly say, “What if she dies on Tuesday? What if you spend the last two days of her life working and regret it?” I know the odds of her not surviving the operation on Tuesday are slim. But every time she goes to the operating room, I think about it the entire week before. I think, “What if this is the last Christmas we have together, what if this is the last movie we watch together and what if this is the last Monday we spend together?” They are fleeting questions that I don’t allow myself to answer. Brett responds, “I have been thinking the same thing all week. I’ll be home Thursday night.” I realize that he was just waiting for me to ask him to come home. That even more than I need him home, he needs to be here. I feel overcome by calm. 153

• Olivia’s Journey •

JANUARY 2, 2014

Tags: psychologist, friendship, PTSD, insomnia I saw a psychologist today. Yup, that’s right. Actually that’s not exactly true. I wrote it, erased it, wrote it, erased it and then finally wrote it again. It’s not that I think psychological help isn’t insightful and smart. I recommend it on a daily basis to the caregivers of the patients I take care of and truly mean it. Your child becoming sick, whether it is a life-long illness or a sudden event, is debilitating; it’s like you can’t breathe and have no idea how to come up for air. I am a fan of psychology, plus or minus medication, to help anyone cope. Olivia has seen a psychologist for four years. It started out working on a needle phobia, and continued on to the concept of what being normal is, and how to cope with the lack of normalcy in her life. She walks a little bit taller every time she leaves her psychologist’s office. Even I look forward to those appointments. But in 10 and a half years and over 29 operations, I’ve never sought help. So why now? The truth is, I wouldn’t have seen anyone if it weren’t for my best friend. I’m lucky to have a best friend who has been there through every single step of this journey. It’s surprising how many friends you lose when you have a sick child. Not because they are evil or even uncaring but because the novelty wears off, and when you constantly have to cancel plans or have a child who isn’t quite as quick or mobile as others, people naturally move on. This happens with friends even if you don’t have a sick child, I suppose; I just think it hurts more when you do. But this isn’t the case with my best friend.

I was thinking about Olivia and it hit me out of the blue, like a ton of bricks: “This is never going to go away.” Her push for me to see someone stems from the fact that I can’t sleep. Over the last few years, I have eluded sleep for extended periods of time. I can remember when my trouble sleeping started. It was a couple years ago. There really wasn’t anything remarkable about the day, but still I remember it so clearly. I was driving to the grocery store in the evening to grab a few things. I was thinking about Olivia and it hit me out of the blue, like a ton of bricks: “This is never going to go away.” I thought that if I read enough, worked hard enough, or was just good enough, that at some point I’d be able to stop worrying about her. The realization that there was never going to be an end to her illness was staggering. I pulled over into a parking lot and just cried. I didn’t sleep more than two or three hours a night for the next several months. The next time I couldn’t sleep for an extended period

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of time was last year when Olivia suddenly became quite sick. She had been at school, three months after a spinal shunt revision, when I got a call from my nanny who said Olivia was crying hysterically and the back of her t-shirt was wet. I called my mom to bring her up to the hospital where I discovered her back incision had opened up. Over the next couple days they tried to sew it back together but the incision kept falling apart. Finally they admitted her and took the spinal shunt (a tube that runs from her spine to her stomach to drain her spinal fluid) out in an effort to give her back a rest and see if she even needed it any more. The first day was fine. We were overjoyed that we might be able to go down to just a VP shunt (a tube that runs under her skin from the middle of her brain to her stomach). The next night she woke me up at 1 a.m. and I could hear her throwing up. When I came out of the room she was holding her head crying. The next few days were a blur. By mid-morning, her neurosurgeon and pediatrician were there and everyone looked incredibly worried. Over the course of the day she developed double vision, became unconscious and was intubated. The next two days were spent in the operating room taking her skull apart and reconstructing it to give her brain more room to swell. I slept in a chair with my head on the foot of her bed. She was in the intensive care for 10 days and then moved to the regular unit. The next day she started to throw up again, and at 4 p.m. on Christmas Eve doctors put a new spinal shunt in. When she was able to walk again, her right leg didn’t work well and she was incredibly weak. I didn’t sleep from December to March. I barely remember any of those months. It’s like having PTSD, but no one thinks of that for trauma related to our sick kids. I remember not wanting to have visitors, not wanting to go anywhere, and crying a lot. Which brings me to the past month. This has been the longest time we’ve ever waited for an operation. Normally for shunted kids, they get sick and get their shunt is revised in a matter of hours or a few days. We have been waiting for a system to come from two different countries and for her neurosurgeon and pediatrician to return from holidays. The waiting is awful. Every day I wonder if we are making the right decision. Every day I go over what could possibly go wrong and what the options are if things do. Every day I worry. Every night I don’t sleep. This time my best friend pushed me to seek counselling, and this time I was ready to accept the help. There are six days until her operation. I’m hoping for some sleep before then.

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• Olivia’s Journey •

JANUARY 3, 2014

Tags: hospital preparation, expectation, learning disabilities Today was a day of errands. With just five days until Olivia’s operation, it’s like planning for the worst vacation ever. Doing laundry, cleaning the house and preparing meals and necessities for the hospital. Over the years of doing this, I’ve learned some helpful tricks – things like stocking up on Superstore fleece pajamas at Christmas time, as they are MRI compatible and the arms are wide enough to fit an IV through them easily; buying the colouring books at Walmart that have adhesive tops so they stick to the walls of her hospital room without tape; buying a brand new pack of the Crayola thin markers, because they are light and easy to color with when her hands aren’t working right; and making sure I have warm pajamas, as the air conditioning vents are conveniently located right over the parent cots. I’ve learned to pack our own pillows, because sleeping on a rubberized pillows sucks, and I make sure we have a blanket that will cover her entire bed to try to hide the all too obvious “medicalness” of the hospital. I also spent part of the day organizing her schoolwork and making sure her school laptop is up-to-date. Trying to manage school when you are constantly in and out of the hospital can be a challenge, overwhelming at times. I remember the day we were told there was a problem with Olivia’s brain. She was just eight days old and a resident came in and told us she had a massive bleed in her brain, and that she would probably never walk, feed herself or see. I remember him patting me on the knee and asking if I had any questions. I barely squeaked out a “no,” so stunned I could hardly move. A few hours and a few thousand tears later, the neurosurgeon walked in the door. He checked her out and quickly reassured us that the location of the bleed couldn’t have been better. The bleed was largely in her ventricles (the fluid filled lakes in the middle of your brain) and not in the brain tissue. He said, “She will do great, Wendy. She will need some surgery and may have some learning disabilities, but otherwise will do quite well.” Brett and I burst into tears of relief and I said out loud, “If all she has is learning disabilities, I will never complain.” I didn’t know how painful learning disabilities could be. In the first grade, we started to notice how hard it was for her to understand math. It was incredibly frustrating for her to do homework assignments. I would sit with her to work on the simplest of concepts, like counting by fives, and I realized that she couldn’t grasp it. When she finally did grasp the concept we would go on to something else. If we came back to that concept five minutes later, it was like she had never heard it before. She had problems with short-term memory. I remember wrestling with what to do. I felt incredibly guilty for feeling so disappointed. The Compass

Every day I work with families that lose their child, families that would literally give everything to be able to worry about a learning disability instead of trying to survive their first, fifth or even 10th start of the school year without their pumpkin. Knowing these families has changed me as a person and as a parent. Each one of these kiddos, whether I knew them for eight days or eight years has made me a more grateful person, a more diligent clinician and a more patient mother. I knew I should be able to accept her learning disability and just be grateful to have her, but I couldn’t. I think any kid who has brain surgery should get a “get out of jail free” card for academics. They should be brilliant, school should come easy to them and they should have every door in the world open for them to choose the career of their choice. But it doesn’t work that way. In fact in most cases, it’s the exact opposite. These kids fight so hard just to survive and then they have to struggle every day in school. It’s unfair. Even more than worrying about expecting too much from Olivia, I worried that I wouldn’t expect enough.

I remember the day we were told there was a problem with Olivia’s brain. She was just eight days old and a resident came in and told us she had a massive bleed in her brain, and that she would probably never walk, feed herself or see. I remember sitting at the table one evening doing homework with Olivia and Kenzie, as Kenzie whipped through her assigned homework and I gave her a few extra math sheets to work on. When Olivia finished her math, 45 minutes after Kenzie was done, she asked me if she needed to do any extra math sheets. I said, “No, that’s OK, you’ve been working at it long enough.” Not looking up at me she said, “Mom, why do you expect less out of me than Kenzie?” I had no response, because the truth was, at that time, I did. I come from a very academic family. From the time we were little my parents would ask us what we were going to take when we got to university, not if we got there. I always assumed I would have children who would do the same thing. That’s not to say I was always a good student; I barely scraped by in high school until one day my dad sat me down and said, “You know Wendy, not everyone is meant to go to post-secondary education. We just want you to have a career and work hard at it to be the best you can be.” In my teenage rebellion I thought, “Screw you, I am going to study hard and I will show you when I get in.” As Olivia moved forward in school, it was clear she would need some help. I had no idea how to navigate the school system. We had private neuropsych testing 155

• Olivia’s Journey •

done to understand how she learns, but I didn’t know how to translate that into the real-world classroom environment. Thank goodness for Brett’s uncle, the principal of a school. Otherwise, I would have completely lost my mind by now. He would tell me to go to the school and ask for various things. I would put on my big-girl pants and march down to the school to politely ask for what he had suggested only to get a “Sorry, we can’t do that Wendy,” and I would leave feeling confused and frustrated. I would call him and say the school can’t do whatever it is he wanted. He would ask me to repeat the conversation. He would then direct me to go back and say what seemed to me like the exact same thing with one or two words changed and I would magically get a “of course we can do that.” That was when I realized that this was an area of her life that we would never be able to fix on our own, we would always need help. Even with help navigating the school system, I completely underestimated how heartbreaking it is to watch your child struggle to learn. It is like when your child is the only kid not invited to the popular kid’s birthday party, only every day for the rest of their school life. People often say, “Well, she just may never go to university,” I know I am supposed to think, “Well that’s ok, she’s alive and that’s good enough for me,” but I don’t. I feel sad

and mad and annoyed, every time. In the last couple years, I’ve had to understand a whole new area of technology related to learning. I have learned about apps that shortened the length of an article, dictation programs, pens that you can record on, programs that can anticipate what she wants to write, and I have learned how to be a squeaky wheel, but not too squeaky, at school so her needs are met. I pushed her to work on a laptop all the time so she can have her school work with her whether in the hospital, on the couch or in the class. I learned to let some old-school ideas go – like she needs to memorize the times tables – and accept that she will always need a calculator to figure out fives times five. I have learned how to stop trying to “fix her” academically, and instead focus on finding new and innovative ways to maximize her strengths and minimize her weaknesses. In truth, I had to get over myself and focus on her. I’m not quite there yet. I still wake up every day hoping school will just click for her, and every day won’t be such a challenge. Selfishly I wish the ache in my heart that comes with watching her struggle would subside, but it hasn’t, yet. There are five days until we head to the hospital. It is hard to decide if I want the time to speed up to get the surgery over with or slow down so I can have more time with her.

JANUARY 5, 2014

Tags: peaceful moment, medical kids I lay in bed this morning with a numb arm. When I woke up, Olivia had assumed her usual position when she isn’t feeling well and was asleep with her head in crook of my arm, managing to cut off the blood supply to my fingers. But I didn’t move. Like many parents when they catch a moment of their sleeping child’s peacefulness I stare at her and gently kiss her head feeling overwhelmed by how much I love her. When I kiss her head I can feel where she is still missing the bone in her skull from last year’s operations, and notice the railroad tracks of scars that crisscross her head, but they truly don’t bother me. All of these little things, and big things, make her who she is and make us who we are as a family. I couldn’t love her more for that. There is something about medical children that is different from others, not better, certainly not worse, but different. It took me years to see a pattern in all of the children that I take care of who have had significant medical events in their lives, but I see it clear as day now. I can pick out a child who has had multiple surgeries even before I even know their history, something that at times makes me look psychic to my loved ones. They are old souls in little bodies. They feel

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more deeply, love more strongly and unfortunately fall harder than the average child. That’s not to say that every child who has had a hangnail removed is like this, but if you have a medical child in your life, you know what I am talking about.

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• Olivia’s Journey •

JANUARY 6, 2014

Tags: coping, fear, strategies, the box Finally Olivia begins to manifest the stress of the situation and I see her get progressively grumpier as the day of the operation nears, with Jake getting the brunt of her anger. I give her a few minutes and then knock on her door. Through tears she says, “I just want to be alone.” More than anything I want to open the door and make everything OK, but I give her a few minutes to cry it out. When I come back upstairs, I listen at the door and can’t hear her crying. I assume she has fallen asleep but when I open the door she is laying on her bed writing on some index cards. I lay down beside her on the bed and listen to how annoying Jake is and how much better our family would be if we just had all girls, “Except for Daddy, but he doesn’t count.” I ask her what she is working on and she looks down a bit embarrassed and says, “I am writing down some things I am worried about and putting them in this box.” I’m actually not sure what to say. I want to read all the cards to see what is on her mind but don’t want to have her shut down if I push. “Can I read what you wrote?” I ask. “Sure,” she says, but reaches in the box, riffles around and takes two cards out and shoves then under her pillow. Of course those are the two I really want to read, but I pretend I didn’t see her do it. “So you are writing down what you are worried about and going to bring the box to the hospital with you? I think that is brilliant Liv. Very grown up.” She is still looking down colouring on one and says, “No. I am going to leave the worries here on my shelf so I don’t have to worry about them when I am in there.” I am speechless. I have seen this box on her shelf for years. In fact we just cleaned her entire room two days ago and I wanted to throw it out, but she quickly grabbed it and said she wanted to leave it on her shelf. I assumed it had some kid treasures in it like rocks or stickers or nail polish, but now I understand why. My hands shake a bit as I look pick up the cards, not sure if I am ready to read what she has written. The first card I pick up says, “6. I worry about strange dogs.” I am relieved to see a normal kid worry on the card. She reaches over and turns the card over in my hand. “On the back I write what I can do so I am not so scared,” she says with some pride. This one says, “I just ask the owner if the dog is friendly.” It seems logical to me, and I smile a little. The next card reads “2. I worry about going into surgery.” I turn the card over and read, “I can hold my mom’s hand when they put the mask on my face. I have done this 29 times and I am OK.” That one hurts a bit more. I want to ask her some comforting question about what specifically she is worried about, but I can’t put the words together so I just keep reading. “3. I worry that my IV needle will get stuck,” it reads. The Compass

“I ask my mom if that’s possible. She won’t lie to me.” I am trying desperately not to let the stinging in my eyes spill over my cheeks and risk breaking the magic of this moment. “4. I worry that I won’t recognize people when I wake up from the operation,” and “I just ask my mom who people are.” The first tear slides down my face. Then comes the card I am dreading, the one that I know must be in here. “1. I worry that I won’t wake up and no one will remember me.” I fall to pieces, the tears streaming down my face, and I try not to make any noise. She looks up at me from her colouring, but doesn’t say a word and looks back down. Through blurred eyes I read the next one, “5. I worry that my eyes will get swollen again and that they will never open back up.” Last year after one of her operations her eyes swelled shut for a day or two and it scared her to death as she thought she was blind. Since then she won’t sleep with her lights off. It doesn’t surprise me that this is a worry, but doesn’t hurt any less either. And the last card reads “7. I worry about strangers,” with “My mom tells me who it is. I can ask ‘What’s your name.’ At first I am shy then I get to know them.” There are two other cards in the bottom of the box, one written in an adult’s handwriting and one written in hers. I realize that this idea must have come from her psychologist, whom she trusts so completely. The card written in adult writing says, “Being brave means doing something even though you are scared,” and the card written by her says, “Olivia’s coping strategies: 157

• Olivia’s Journey •

When I get scared I can: one – do some deep belly breathing, two – think of fun memories like my old house, three – I can bring a book to read or four – I can watch TV.” When I regain my composure I can’t help but wonder what could possibly be on the other two cards that could be more heart wrenching that these. The truth is, I don’t want to read them anymore. Then I put all of the cards back in her box and ask her if she needs anything. She says she doesn’t but I grab her some cookies and milk and put it on her bedside anyway. When I am leaving the room I kiss her on the head and tell her I am proud of her. She gives me a shy smile and says, “I know, Mom.” I am constantly amazed at how much I learn from her and I wonder if I’d be able to leave my worries on the shelf like that.

JANUARY 7, 2014

Tags: disappointment, preparation It’s funny to me how walking into the hospital as the parent of a patient is so different from walking in there as an employee. The hospital itself actually smells different, looks different and feels different. Shortcuts I would normally take suddenly feel off limits. Even using my key to go into my own office somehow feels wrong. We had to be at the pre-admission clinic for 1 p.m. today. All morning I checked off items on my “Hospital To Do List.” Slippers. Check. Markers. Check. iPad charger. Check. As I quickly complete the list I hear my phone buzz. Incoming text. I grab my phone half looking at it while I’m reading the last few items on the list. There is a text from her neurosurgeon. Surgery has been postponed until Wednesday. My heart sinks. Not because she is super sick today or anything, but because there is something about the psychology of getting prepared for the hospital that is not conducive to adding in another day. I have things timed down to the minute so we have enough time to get everything done, but not too much time to have to think about what is coming.

Brett and I have been very lucky to have a surgeon who is the perfect fit for us. He is very honest and straightforward with little to no sugar coating. I stare at my phone for a minute trying to decide if I want to call and see if there is a way that the surgery can still be done tomorrow, but quickly snap out of it. I know the million reasons that surgeries can be postponed and none of them are “just because.” We have bumped other children when Olivia has been critically ill, causing other families the same angst I now feel. We have been bumped before. It is unfortunately just another aspect of the whole process that is out of 158

What a relief that would be. I ask her if she would mind if I share the cards with some other people. She of course asks me who and why, and I explain the blog. She asks me why adults would be interested in her cards and I explain that sometimes hearing someone else’s story helps people to cope with their own. She gives me a simple “sure,” but I can tell she is proud that any adult could learn anything from her. She asks me if she has to include the two cards form under her pillow and I say, “Only if you want to.” She thinks for a minute and says “No, I think I’ll just keep those ones,” and secretly I’m relieved. I love that she is assertive enough to know her own boundaries. Three more days until her operation.

our control. Brett has run out to do some errands so I text him the news. I text a dozen other people who had plans that either involved coming to the hospital or taking care of my other two children. Then I turn to the couch to tell Olivia. She immediately bursts into tears, frustrated that she has to wait another day. I point out all the advantages of waiting, which actually help me feel less disappointed. “We can have Samantha (her best friend) and their family over for dinner and you and I can finish the level on Luigi’s Haunted Castle,” I say as she wipes the tears from her face. “Promise?” she asks. “Of course,” I say texting Samantha’s mom right away to prove to her I mean it. We still have to head to the pre-admission clinic for 1 p.m. This is always the most important appointment for Olivia because she gets a chance to speak to the doctor who will put her to sleep. She desperately needs the reassurance that they will start her IV when she is asleep and this is her chance to make sure it will happen the same way it has 29 times before. When we get there, her neurosurgeon and Stacey are waiting for us. She hugs them both and we head in to the clinic to chat. It’s funny how people connect with different doctors. You can have the same personality trait in a surgeon that will be perfect for one family and not so great for another. One is not necessarily better than the other, just a better fit. Brett and I have been very lucky to have a surgeon who is the perfect fit for us. He is very honest and straightforward with little to no sugar coating. For me this is essential, but at times it can sting a bit. He sits down to talk to Brett. He and I have hashed out what needs to be done a million times during clinic appointments and phone calls, and this is his time to talk directly to Brett. I listen intently as he goes over the history of where we have been, what the current problems are, and where we need to go on Wednesday. I know it all but I listen like it’s brand new information. Then come the two things I know he is going to The Compass

• Olivia’s Journey •

say that I dread: “In case this doesn’t work….” and “If we need to do something else…” I know logically there are no guarantees, especially in neurosurgery. I know this isn’t a sure thing, otherwise we wouldn’t be on operation number 30, but every time it makes me flinch. Don’t get me wrong, I would much rather have the sting of this conversation before the operation, than the gut wrenching disappointment of something happening that we didn’t know was a possibility. When he is done he leaves, and the anesthesiologist comes in to see if we have any questions. Usually I make Olivia ask the questions she has, as I think she needs to learn to advocate for herself being that she will always require surgical care and at some point she will be an adult and responsible for her own medical journey. It scares me to death even thinking about that, but that doesn’t make it any less of a reality. She asks the doctor, “Can you gas me tomorrow?” I hate it when she says that. It sounds so morbid. The anesthesiologist knows exactly that she means – can she be asleep before they start her IV? The doctor says she doesn’t think it will be a problem. There are no promises, but it should be OK. “Well done,” I think. Another thing I have learned in dealing with sick children is never to promise anything you don’t know you can deliver. If things don’t go as planned, they will never trust you again. The anesthesiologist we are seeing today will not necessarily be the doctor putting her to sleep on Wednesday, so she doesn’t give her an

JANUARY 7, 2014

Tags: fear, anticipation The operation is tomorrow morning at 7:20 a.m. We have to be at the hospital for 6 a.m. and we have to get Olivia up at 5 a.m. to wash her hair with the pre-op shampoo. I’m dreading it as I know she will cry from the

JANUARY 8, 2014

Tags: surgery day As soon as she opens her eyes, she says, “I don’t want to go Mommy.” It’s always “Mommy” when she is scared. “I know kiddo,” I say, “but just think – in a few hours it will all be done.” “Do you think we can do my Lego tonight when I wake up?” She asks. “Of course honey,” I say, and she smiles and reaches across to give me a big hug. I go downstairs to finish

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absolute yes, but the answer is good enough to calm Olivia enough that she flips open her Nintendo DS and starts to play it again. When we are done and driving home, Olivia pipes up from that back seat, “I can’t wait to get this over with and go skiing in Jasper next month.” Without thinking I say, “Oh Liv, you won’t be ready to ski next month.” Damn it. Rookie mistake. I should have just let it slide today. There will be plenty of time to discuss it in the coming weeks. She immediately burst into tears. “I hate having surgery! It’s so unfair! Everyone has a better life than me! Everyone gets to do fun things and I just lay on the couch doing nothing! I hate my life!” she shouts almost incomprehensibly through her sobs. I immediately retreat and say, “Let’s just see how it goes, that’s a long time away,” but it’s too late. She sinks down in the back seat with her head on the arm rest, as her crying has increased her headache tenfold. I’m so tired. We get home and continue with our plans to order Chinese food, Olivia’s requested meal. Brett hates the “favourite meal before an operation” ritual. He thinks it’s like a prisoner’s last meal before an execution. But it’s tradition, and she requests the meal even before we ask her because she finds so much comfort in the routine. Immediately after dinner she asks to go to bed. It’s been a long day, long month, long 10 years. Have a good sleep kiddo. I love you.

time she opens her eyes until she goes to the operating room, out of fear. She will plead for me not to take her, then get mad and then cling to both of us as we walk down the long hall to the operating room.

packing the other two lunches. I hear my mom open the front door and tears spill over my cheeks. There is nothing like having a sick child to make you feel like a child again. Two hours down, three to go. Seems like time is crawling by. I’m so tired. She’s out of the operating room and settled in bed. Back and neck sore but tolerable. The neurosurgeon said it went great. I can’t quite relax, but I’m getting there.

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• Olivia’s Journey •

JANUARY 9, 2014

Tags: medical team, the village As I lay here on the cot, the step-down ICU is quiet, but my thoughts are not. What a day. I forget each time how overwhelming this whole process is. The day went by in the blink of an eye and even now, I can only remember snapshots of it. While it’s an exhausting process, it is one that amazes me every time. At times I hear people complain about our health care system, and while I agree that there is certainly room for improvement, I marvel at the number of people it takes to make sure my child receives exceptional care. The nurses in the pre-admission clinic check on us several times to see if we need a blanket, a pillow, the lights on, the lights dimmed or even a hug. Exceptional. Olivia’s operation is delayed due to a trauma that required many people to work through the entire night. Instead of then requiring that same staff to work all day or cancelling Olivia’s operation, the doctors and nurses juggle complicated scheduling to make sure that my daughter is cared for by well rested and competent staff. Exceptional.

We walk in to the operating room and a nurse immediately gets her a warm flannel blanket, while another nurse makes an exaggerated comment about how beautiful her hair is and smiles. While we are waiting, her neurosurgeon wanders by to see how we are holding up. He stops to tell us a funny story about something that happened on his Christmas holidays which makes both Brett and I laugh out loud, something we couldn’t have needed more at that exact time. Exceptional. When it is finally our time to go to the operating room, a porter comes to walk us down. He addresses Olivia by her name, asks her if she needs anything, and makes a point to tell her a funny joke as she is clearly nervous. I grab my phone to take it with me and glance at it realizing I have more than one hundred messages. Messages of love, kind words, caring and above all else, hope. When we get to the OR, the anesthesiologist, the one who was not supposed to be doing Olivia’s case but was flexible enough to come in to her theater and help out, comes in to talk to her. He asks our opinion on what works best for her for pain, asks which hand she writes with so he can make sure he puts her IV in the other hand because he knows she loves to colour and is more than happy to give her an immunization while she is asleep so she can have one less poke while awake. We walk in to the OR and a nurse immediately gets her a warm flannel blanket, while another nurse makes an exaggerated comment about how beautiful her hair is and smiles. When she is asleep, they let me 160

kiss her cheek and one of the nurses walks me out of the operating room, then gives me a big hug and promises me they will take good care of my daughter. Exceptional. We grab her stuff and walk out to the cafeteria where my sister Julie and brother in law TM are sitting. They drove in from Calgary, like every operation before, to be there for Brett and I when we need them the most. Exceptional – especially in light of the fact TM just had surgery on a broken leg a few days ago. In the meantime, Aaron has picked Kenzie up to drive her to school and Kurt and Marnie have offered to treat Jake to an amazing day to keep his mind off the fact that both Brett and I are not around. Exceptional. By the time we get up to her floor and check in at the desk on the Pediatric Surgical Unit, my mom has texted me to see if we need anything. Normally she would be in Phoenix by now, but she stayed back to help Brett and me with the kids. We sit and wait for the operation to be over. Old friends Stacey and Carolyn show up, as always, to bring food and make us laugh. Exceptional. New faces Martin and Wendy bring hugs, laughs, food and above all friendship to help the time pass. Exceptional. All the while, dozens of people stop by and hundreds of texts roll in to keep our spirits high. They’re a welcome distraction from all of the worry. When Olivia gets back, tired, disoriented and in pain, the nurses react quickly and with amazing competence to get her moved in to bed, pain medications administered and tuck her in with warm blankets. Her neurosurgeon and both pediatricians have already stopped in to assess her and make sure her post-op course is going as planned. Exceptional and critical. Natalka pops in with gifts of warm blankets and tears of love like she always does. Aaron and Carolyn come back up to the hospital to bring the all-important pizza and Liv’s two best friends Sammy and Lila to make her happy. Melissa shows up with gifts and snacks from so many good friends and well-wishers that I am stunned and Olivia is thrilled. Ideas flow about new initiatives and plans for the fund as we are once again reminded The Compass

• Olivia’s Journey •

why we do it. Olivia’s neurosurgeon pops back up to check on her one last time as he is concerned about some potential leaking in her back. Her night nurse comes on and checks her out completely to make sure nothing is being missed. As I lie here watching my beautiful but fragile little

girl recover from surgery on her brain and spine, I am facing an amazing mom with a new baby. It is her first baby and first step in her medical journey. I hope and pray she has an exceptional village like mine to help her raise her medical child. It makes all the difference.

JANUARY 10, 2014

Tags: other children, staying home, self-identity Some people “do” the hospital well. I am not one of them. It’s ironic, since I work here, I know. The first 48 hours in the hospital are really hard for me. I don’t sit around well, ever. I like to be busy and have a dozen frying pans in the fire at the best of times. It is always the way I have been, and short of some miracle, it is probably always the way I will be. I really love everything that I do that makes me busy: my family life, my job and the fund. My family life goes without saying. But worrying about fundraising or program planning for the Neurosurgery Kids Fund is also super rewarding. I get to have discussions with various people who all genuinely believe that kids who have had brain or spinal cord surgery or injury deserve better, people who are willing to work hard enough to find enough money to be able to make a tangible difference in these kids’ lives, and in my daughter’s life, regardless of the cost. I love it all. And I love the work part of my life as well. I love the patient population, the team I work with and the families. When I am working I am not thought of as a mother, or a wife or even a friend. I am “judged” based on my clinical skills, not how good my kids’ manners are. Taking care of other peoples sick children is unbelievably rewarding, and truthfully much easier than taking care of my own sick child. Watching my daughter suffer is agonizing. It’s interesting when people suggest to me that I take more time off to be home with her, like time is the same thing as going to Disneyland or Hawaii. Taking time off when Olivia is really sick or in the hospital is a no-brainer for me. But time off when she is sick, but not too sick, is almost too much time for me to analyze Olivia’s situation and second guess the decisions I’ve made. It is more time to stare at her, actually trying to will her to be healthier. And while I do love the time I spend with her in the hospital, I miss the comfort of my family’s

JANUARY 11, 2014

Tags: good day, family and friends Today was a good day. Today was a day of hope and inspiration, both from my daughter and the village that is raising her. Today was a day of visits from family, friends and even patients. It was also the day all of the cards sent for her arrived. It was an inspiring day, a day that gives The Compass

home routine. I miss reading with Kenzie and Jake and baths and watching Despicable Me in bed. Watching the other two leave at the end of the day is so hard every time. Kenzie cries and holds on to me until Brett pries her off my arm. I miss talking to Brett about little things because when Olivia in in the hospital all of our conversations are about juggling Kenzie and Jake or inquires about her pain or how often she has vomited in the last hour. I want to talk about who is making dinner or who is picking up the kids, but I already know the answer to both questions and neither of them is me.

me strength for a hundred more medical days. Day three in the hospital. I got some sleep this morning, which made me feel like a new person. Olivia had a quiet day today. Her neck was pretty sore so she mostly just watched TV and slept. The day flew by with amazing visits from friends and family. 161

• Olivia’s Journey •

JANUARY 12, 2014

Tags: a divided family The underlying cause of Olivia’s frustration and mine is watching life go by and not being able to join in. While this hospital stay has only been four days, it has been years of sitting on the sidelines. You learn to live this parallel life, even within your own family. Sometimes you just don’t want to do it anymore.

The underlying cause of Olivia’s frustration and mine is watching life go by and not being able to join in. This is made glaringly obvious today with Jake having his first downhill ski race, which I desperately would love to see. We had a sporting identity crisis for our kids largely influenced by Olivia’s illness. Both of the girls started out ski racing and Jake was in hockey. Like every family with kids in sports we were pulled a million different ways, but somehow figured out how, with many stops at Tim Horton’s and McDonalds on the weekend, to balance it all. Then Olivia got sick again and has essentially been sick for the past three years. This throws a whole new set of circumstances in to the mix. With her not being able to stand up for long, we need to be in three places at once, and even that is

JANUARY 14, 2014

Tags: normal Olivia and I have always had this tradition of late-night movies and popcorn when she is in hospital. I crawled in bed with her and after some fidgeting and fussing around so we were both comfortable, she started the movie. I asked her what she had picked and she said the movie was called Koala Kid. She explained that the movie is about a koala that is white among a pack of grey koala bears and he doesn’t fit in so he joins a carnival. For as long as I can remember my kids have had this sort of odd tradition of picking a character to be in every movie that they watch. It’s not that they do anything with the character they have picked, like acting out the role or saying their lines, it’s just who they identify with. At times this has caused some serious meltdowns and occasionally almost leads to blows, as there is a cardinal rule that two people can’t be the same character.

We thought if we told her she was normal often enough she actually would be. As the movie began Olivia asked me who I was going to be. I threw the question back at her asked her who she wanted to be, letting her pick first, and she said, 162

manageable if she is not in surgery or the PICU or the inpatient unit at the Stollery. Except it breaks her heart to watch us all go while she is left at home. My mom can come sit with her, but then once again she is left out. Misery loves company and if I stay, I can see she feels like we are “suffering in silence” together and it takes most of the sting out of the disappointment. I see many medical families struggle with the same thing. If your child has trouble walking, one parent goes to the birthday party while the other one stays home because the birthday party venue is not conducive to walking. If your child is restricted in what they can eat, then one parent is constantly “on,” trying to make sure the child doesn’t eat anything that could be medically harmful. If you have to be at a million medical appointments, you get tired of dragging the whole clan with you and start to make other arrangements for the siblings so you can survive the day. Whatever the reason, the outcome is all the same: your family ends up divided. You constantly balance what is right for your medical child and what is right for your other children. If you’re not careful, you soon realize that you haven’t had a Saturday or Sunday in the same vicinity for months on end. It’s not difficult to see why the divorce rate for families with a chronically ill child is staggering.

“Well obviously I am the white koala.” I said to her, “Don’t you want to be the girl koala?” knowing that this is usually the fight between her and Kenzie at home. Without hesitating she said, “No, she’s normal. I’m the white koala.” Normal. Average. Just like everyone else. These are words and statements that have taken on a negative connotation in today’s day and age where many strive to be bigger, faster and better. Striving to be “normal” can seem to some like a simple goal, or even a silly one, but for Olivia, feeling normal can at times feel impossible. When she is particularly frustrated with her medical situation, just wanting to be normal is her go-to phrase. And oddly enough, it is a phrase that I struggle with. Sometimes I say, “You are normal,” but that’s not entirely true. While there are parts of her life that are certainly normal, there is clearly a part of her life that is not normal. When Olivia was little, Brett and I worked very hard to make sure that she felt normal. We would minimize her medical needs to her, our family, her teachers and even ourselves. We thought if we told her she was normal often enough she actually would be. The problem with this approach was that we forgot to honour what she had actually been through. I remember once she said to me, “But I’m just not normal.” The Compass

• Olivia’s Journey •

For the first time I changed my canned response and said, “Yeah, you’re right. You don’t have a life like everyone else. You have too many doctors appointments and have had too many surgeries. But look at the cool things you have got to do from having gone through all of this. You get to go to camp, you have friends you would not have had otherwise and you got to have your Make a Wish trip.”

JANUARY 15, 2014

Tags: post-operative issues, hope It’s been a long couple days. Olivia had some sort of virus on Tuesday and as a result was either crying, throwing up or sleeping. Between the ondansetron, gravol, maxeran, Zantac and morphine she found some relief at the end of the day and managed to get some much-needed sleep over night. That led us to the big day yesterday – the day of sitting up. When she woke up in the morning you could almost cut the excitement in the room with a knife. Sitting up – a task so simple, but so huge. Sitting up means the ability to use a reclining wheelchair, which means escape from her room. For me it means one step closer to home. We raised the head of her bed to 20 degrees, which doesn’t sound like much but is actually more upright than you would think. The first half an hour goes by and she is doing great. Her back looks good, and she doesn’t have a headache. At the one-hour mark I take a peek at her back. Immediately I feel my stomach sink. Swelling. Not dramatic, but swelling none the less. It is so subtle that at first I am not sure if I might even be imagining it. I look a couple more times and then finally ask her nurse to look. She’s not concerned. Half hour later I look again. More swelling, still not dramatic but I am more convinced it is actually there. I have her neurosurgeon

JANUARY 20, 2014

Tags: a turn for the worse, when it rains it pours I have to admit I have sat here for a long time with a heavy heart and tears in my eyes as I search for the words to write an update in “Olivia’s Journey.” Olivia has been on strict bed rest for the last few weeks and has been vomiting continually. Despite this, she finds the strength to smile. The doctors placed her on

“But I didn’t ask for any of that,” she said. I told her, “You are right Liv, you certainly didn’t ask for any of those cool things, but you didn’t ask for any of the surgeries either. Your life isn’t the same as most of the kids in your class, and it probably never will be.” I remember her hugging me, almost relieved, like what she had always known in her head, that she didn’t have a normal life, I finally said out loud.

paged. He wanders in a bit later and takes a look. Yep, it’s leaking. Not through the skin, which is infinitely worse, but she’s leaking fluid around the valve. He says to put her back flat and leaves. I feel the tears well up in my eyes. Having a leak under the skin isn’t really surprising. She has had them before. Sometimes they have gotten better on their own and at other times they have led to months in the hospital. I knew it was a possibility but it still hurts.

Hope is a tricky thing, because you need it every day to get out of bed. Just once I would like to sail though a procedure, heal with no complications. Why does it feel like a punch in the gut every time? The answer is because of hope. Hope is a tricky thing, because you need it every day to get out of bed, to smile at everyone and to survive chronic illness. But hope causes disappointment and pain as well. Hope makes you feel like something has failed even when it is an expected complication. Hope never totally allows you to prepare for what is to come. But hope is why Olivia is who she is. Hope has allowed us to try something new and to want a better life for her.

intravenous nutrition to help her maintain her intake and hydration. She is such a small little bug to start with – she can’t afford to lose anything else. Tomorrow, she will need to return to the OR because something is wrong with her shunt. This will be operation 31. And to make matters worse, I have the stomach flu.

JANUARY 21, 2014

Tags: waiting Sweet Olivia is in the operating room....

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• Olivia’s Journey •

JANUARY 22, 2014

Tags: advice from dad, trust, the right team Thank god we have the medical team we do. My dad loves to give advice. When I was younger, it used to drive me around the bend, but as I got older I realized that among the slightly long-winded explanations, there is always some deep wisdom. One of the things he stressed to me early in my career was this: surround yourself with a great team and then get out of their way. Support them. Believe in them. Never step on them and they will take you farther than you will ever get on your own. I have always taken this to heart.

Advocating for your child is a skill and an art at the same time. Assembling a medical team that wants to work for you and your child is critical. Early on in my life, certainly in my career, I got the greatest sense of satisfaction from praise. Being told I was a good nurse, a good mother, a good wife meant more to me than most other things in my life. But as I have grown confident in myself, I find a far greater sense of satisfaction in watching others grow and soar than any accolades I ever receive. I couldn’t care less if I get credit for the Neurosurgery Kids Fund or Camp Everest or even my family, as long as they all end up amazing. So over the years I have worked and fought for a great neurosurgical team to work with, great nurses in my clinics and on the ward and a great team to help me raise my family. For my children I need a strong family, strong marriage, great friends and in Olivia’s case, a great medical team. It took me a while to figure out what that meant for her, for my husband and for myself. Over the years it took some tweaking of her team to find the “right” people to help us care for her – a team that fit our vision of what we wanted her life to be, what we thought was realistic and what we thought she deserved. After working so hard to find that team, it would seem crazy to me to then not have faith in them and get out of their way. Finally after years of struggling and failing to control her medical situation, I handed it over to her team. I remember sitting down with her team and saying, “I can’t make these decisions any more. I just need to be her mom,” and feeling this tremendous weight lifted from my very soul. I could physically feel it. Advocating for your child is a skill and an art at the same time. Assembling a medical team that wants to

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work for you and your child is critical. I have learned this skill from watching countless parents do it poorly and others who are absolutely amazing at it. At times I think people equate advocating for your child with controlling the entire medical situation. This isn’t the best way to ensure your child’s care, or the best way to save your sanity. Not trying to control the situation is not the same as being uninterested or uninformed. I always have an opinion about what she needs. The difference is that instead of trying to learn more than the people who have spent their lives learning neurosurgical procedures, I have become an expert in her. I know Olivia inside and out. I know when she is good, when she is off, and when she is really sick. I know her medical history, although at times even that can be a huge amount of information to sift through. I know to bring her in for a checkup or follow-up when she is feeling great, because even though going to another appointment is the last thing I want, her medical team needs to see who she is when she is great so they can remember what we are all trying to achieve. I know when to stand my ground and when to listen because I may not be able to see the entire situation objectively. On Monday when her neurosurgeon told me she needed to go back to the operating room, I knew she wasn’t well when she was standing upright, but I left him to chart the course of actions. The decision was easy. I have learned that relying on the team doesn’t mean you are weak or uninformed or uncaring. As parents we sometimes put a tremendous amount of time and energy in to researching our child’s conditions and possible solutions. Education and information is power. It is equally important to make sure you assemble the right team for you and your child, a team that fits your beliefs, your thoughts and your needs. Taking the time and energy to do this will not only help save a bit of your sanity, but it also means even when you are burnt out or exhausted, your child will receive the very best care from that team, since they are as invested as you are in her health and happiness. The valve in Olivia’s spine is fixed. It’s back to bed rest for at least a week to try to get the incisions to heal. I had a night of nausea and general grumpiness. I’m not sure if she is getting the flu I had. I sure hope not. Operation number 31 is under our belt. Lucky number 31? I hope so. Thanks so much to everyone for your thoughts and prayers over the past few weeks. It constantly amazes me how good people really are.

The Compass

• Olivia’s Journey •

JANUARY 25, 2014

Tags: friendship I had a panic attack last night. All of a sudden at 10 p.m., the light at the end of this particular hospital admission seemed to go out for me. How is her back possibly going to heal? If it does heal, what if it doesn’t work? In the midst of my panic I sent out two SOS texts to very good friends hoping one of them happened to have their phone on. Instantly my phone binged twice. Both were awake. Both wanted to know what was going on. As I spoke to one of them and texted the other I realized how much art there is to being the friend of a chronically ill child. One of my friends went over the medical details with me, both of us trying to determine if there is a medical reason for my panic and the other one texted me to breathe and try to relax. Both recognized it was late and I was tired, but both took different approaches to get to the same point: we are here for you and you will get through this one way or the other. You can Google what to say to the parent of a chronically ill child. You will instantly get thousands of hits of blogs or lists or articles on what we all want you to say to us when we are in a crisis situation. There are an equal number of lists of what not to say to us when we are losing our minds. Sometimes when I read them I think, “Who the heck would ever want to be the friend of a chronically or acutely ill child? There are so many rules about what to say and how to say it, things that if you don’t do them exactly right we will surely implode and never recover.” The truth is, most, if not all parents of a chronically ill child are unbelievably strong, they just might not know it yet. That’s where friends and family come in. Lists of what you should or should not say are good. Not great but good. They are generic and generally a common-sense list of statements that help if you have never been around a sick child, or sick person for that matter, in your entire life. I hesitated to write a note on this topic for fear that all of my friends and family are going to worry that I mean them. In truth I am very lucky. My friends and family have been “doing sick” with me since Olivia was born and have come to do it really well. The thoughts in this blog are just that, thoughts. They are not rules, or lists or anything of that sort for people to live or die by. They are simply things friends and families have done in my life that have left an impression on me. If you are reading this and are a friend of mine, you’re totally not the example of what not to do. That is that other friend I have. You know the one... For me, being the friend of someone with a sick child starts with a conscious decision you have to make. Are you in or are you out? Are you totally in? Neither answer is wrong. Where I think harm can be done is when you sign up for one category and then when the The Compass

going gets tough, decide to switch to another team. So think about where you fit in, what you can commit to, and what role you can play early on and then try to stick to it. Obviously life happens and things will change that may not be in your control. If your role has to change, that’s OK too, just be honest about it. I’m not saying that if you email your friend that you need to take a break from the friendship that they are going to bake you a loaf of bread and send you a “Thank you for being honest card.” The truth is they will probably be hurt and angry and even say a few unpleasant things about you in their head or even out loud. But they won’t continue to rely on you, they will be able to seek out a new place to find that support. Of course, it’s much easier to say than do. It’s even more rarely ever done, but it’s something to consider none the less.

The truth is, most, if not all parents of a chronically ill child are unbelievably strong, they just might not know it yet. That’s where friends and family come in. Not many friends opt out, but it does happen. “Out” means you don’t have the time, energy or resources to be a source of support for the parent or caregiver. It does not mean you are a bad person, should be burned at the stake or are going to you-know-where when your time expires. I have had many friendships come and go in my life. When Olivia was born, Brett and I had some friends that had a lot going on in their lives, things that were out of their control or for whatever reason, prevented them from maintaining a friendship with us in any meaningful way. There were some hurt feelings. As the years move on, some of these relationships have repaired themselves and have become the friendships on which we rely the most. I think the lack of disappointment and fact that trust between us was never violated or broken allowed this. On the other hand, we have had some real struggles with some people. Relationships that were once strong suddenly ended over seemingly silly events. Making a conscious decision to not be there for a friend or family member when their child is sick should not be done lightly as it is very difficult, if not impossible to recover from. It’s like not going to someone’s wedding, or major event like the birth of their child. You can never get that moment back, the memory of that event will always be with you absent. Even if your relationship is struggling when the hospitalization occurs, think long and hard about how you handle it. This may be one of those times in your life where you do in fact “suck it up” and be there for them because if you choose not to, it is almost the same as letting the relationship go entirely. Being “in” is where most people fall. This is where you 165

• Olivia’s Journey •

drop in and email, text or give a phone call on a regular basis to see how things are going. You are the fantastic people in our lives who bring meals, fruit and sneak in the occasional bottle of wine in the bottom of a care package. You know to always call before you come, just in case things have changed medically or we are just too tired to have visitors. You judge the length of your visit from the cues both Olivia and I give, which can be different from visit to visit. You get that when the nurse comes in to help her to the bathroom, you don’t offer to step out, you just do it, and that when she starts to puke you give me a quick hug, ask if I need any help and then cut your visit short, even though you drove for 35 minutes to get there. All of your seemingly small offers, collectively, leave a huge impression on my soul and my family. Thanks. And then there are the “totally in” friends and family. You are my 10 p.m. calls. You are the ones that never miss an operation or a hospitalization even if your visit doesn’t come until late at night. You know to pace yourself in our friendship, because while everyone will come for the initial hospitalization or even the day of the surgery, you will be there in a month or two or 18 when many others have gone back to their normal routine. You don’t promise stuff you can’t deliver. You have read about my child’s illness and while you may not understand it all, you have taken the time to learn the basics. You don’t offer advice on what to do, but you know sometimes I need to run through things out loud to get it straight in my head. If you do have advice or a question you phrase it in a seamless way that doesn’t make me feel like I have missed something or am being crazy. You come to the hospital, late at night, even when I tell you not to because you know I need you. You are there at 3 a.m. when we arrive and are still there in the afternoon when there is a chance there may be a catastrophic outcome. You show up at 6 a.m. and leave a coffee with a note at my bedside, because you know I need sleep more than a visit. You offer to update everyone else because I am too tired to. I can call you and impose, totally screwing up your plans, and I never even know that I did because you just make it work. You don’t go skiing when you really want to, so you can hang out with us and we don’t feel left behind yet again. You can make me laugh when all I want to do is cry and crack an inappropriate joke about my child’s illness because you know I will think it is funny.

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You will periodically cry with me and for me at the same time because you know I am dying a bit inside. You will drive up for a day on the weekend when it’s the last thing you feel like doing. You won’t go to Phoenix because you know I can’t do it without you. You will call me and offer a holiday for me and my other kids because you understand they are struggling too. You will spend hours on the phone talking with me when I feel like all of this is my fault. You are in for the long haul and even though we both may stumble, we will always find our way back to the friendship we both signed up for. You are why I can get up, every morning, and do this all again. You allow me to breathe. Olivia is still flat in bed, but out of her room. I have figured out how to steer the huge bed, and I have only ran over two people’s toes and one old man. I’ve made bracelets, coloured pictures, watched a thousand episodes of Austin & Ally and I think am actually starting to enjoy them, much to my dismay. I had dinner with my mom and the kids at the hospital last night in the garden and enjoyed, to the tips of my toes, watching my girls lay in bed together and chat about what they are going to do when we get home. I’m taking some excellent advice and trying to live for the moment instead of worrying about what is to come on Monday. I hope everyone enjoys the early spring today before the polar vortex descends again tomorrow.

HERE’S HOW YOU HELPED

•Y ou made a point to visit us in the hospital once a week. •Y ou cut your visit short when you saw it wasn’t a great day, even though you drove 35 minutes to get here. •Y ou dropped off a meal for us when we got home. •Y ou went late to a party when you saw I needed to chat. •Y ou discretely stepped out of the room for a few minutes when bathroom time came •Y ou never say you know what I am going through. •Y ou took my other kids out to an event. •Y ou took my shopping list (and money and bought my groceries). •Y ou stayed away when you had a cold, but still called me. •Y ou keep in touch with calls, texts, Facebook and words of encouragement.

The Compass

• Olivia’s Journey •

JANUARY 28, 2014

Tags: hospital friendships, cupcakes Friendships in the hospital, and really among all sick kids, are fast and deep. I’m not entirely sure if it is the common bond of being a sick child or the fact they spend such a concentrated amount of time together that leads to this, but some of Olivia’s closest friends have come from the hospital. Sometimes I wonder if the fact that some of these friends may die makes them shed their shyness and dive in heart first. Sometimes I worry as well. At the age of 10, Olivia has been to the funerals of four friends and has missed the funeral of two others that she would have desperately liked to have gone to, but was too sick. She has stuffies in her room that have a special place as they have been given to her by two amazing moms after they lost their daughters. They are the only two stuffies that have their own beds and that regularly get dusted. Jake touched one of them one time, and it is the only time I have actually seen Olivia punch him. I didn’t even really punish her because I could see the panic and anguish. Facing the mortality of children is crushing, beyond crushing, each and every time. Last December was the closest we have ever come to losing Olivia. There were moments when I thought we had lost the battle. Now I think all the time, “What would I be doing if we had lost her?” Sometimes I hear a song on the radio and think, “I should remember this song just in case I ever have to plan her funeral,” and then just as quickly I feel like I am going to throw up for even letting the thought cross my mind. I am a nurse – it’s a funny profession as we are always talking about boundaries. You have to have boundaries. You can never cross these boundaries for fear of being thought of as weak or unprofessional. How anyone could honestly think that we are going to take care of and at times lose children and not be absolutely devastated is beyond me. There are times that we have lost a patient and I have cried every day, for weeks, on the way home from work. But I could never say that out loud for fear of being thought of as having bad boundaries. When I talk to the surgeons we often wonder what people think we are like. Do they really think we come to work, operate on children, see the devastating effects of brain tumours or bleeds or car accidents and then just walk out like it was just another day at the office? All of us can remember every patient we have lost, the circumstances around that death and the impact of that day on the family. And I have learned to love the kids, grieve for their loss, use what I have learned from them to better who I am both personally and professionally and then tuck them

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away in my heart so I can get up the next day and care for the next critically ill child. I never forget them. The walls in my office are papered with pictures, notes and funeral notices of the children that I have lost in my practice. It is overflowing, but I can’t take even one down as even the thought of rearranging them brings me anxiety and sadness. It is these children that give me the sense of urgency for change. Waiting to build an environment that is conducive to support and research and sometimes just pure, uncensored fun cannot wait, because if it has to, some of these children will no longer be here.

Olivia and her new little friend sold their cupcakes at a makeshift cupcake stand outside of the pediatric surgical unit. They wore matching night gowns and giggled every time someone bought a cupcake for two dollars. In the three years we have been doing Camp Everest we have lost 15 per cent of our campers. Unacceptable. And while I am realistic and realize that for now we can’t save every child, as a community we can maximize every year, every day, every single minute that they have. This is what makes me put my sick child to bed on day 23 in the hospital and then at 11:30 p.m. head to my office to pay invoices, work on fundraisers and plan the summer camps for next year, because they all just deserve more and it is up to all of us to give them that. I tried to get Olivia up again on Monday and her back leaked under the skin again. I was absolutely devastated, but as always, I have to suck it up and cope with it as there is nothing but time that can help. Being able to get up in the wheelchair is a huge help. Olivia and her new little friend sold their cupcakes at a makeshift cupcake stand outside of the pediatric surgical unit. They wore matching night gowns and giggled every time someone bought a cupcake for two dollars. They sold all the cupcakes in 30 minutes, but made a friendship that will last a lifetime. I will try to get her up again next Monday. It’s hard to believe we are coming up on a month here. Hopefully we’ll be home next week. My fingers are crossed. Continue following Wendy and Olivia’s journey at: facebook.com/neurosurgerykids

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SECTION 6.4 – MAP OF THE STOLLERY CHILDREN’S HOSPITAL All maps courtesy of albertahealthservices.ca Photos approved by Stollery Children’s Hospital and AHS

MAP

SITE

Walter C. Mackenzie Health Sciences Centre 87 AVE

87 AVE

Jubilee Auditorium

Lister Hall

OPR Outpatient

Edmonton Clinic North

Residence College Plaza

Public Parking Entrance

Medical Sciences Building

➋

WALTER C. MACKENZIE HEALTH SCIENCES CENTRE

Future Site

Pedestrian/ LRT Crossing

➊

P EMERGENCY

84 AVE

➌

OUTPATIENT RESIDENCE

HEALTH SCIENCES LRT

RTF

85 AVE

Clinical Sciences Building

➍

83 AVE. Blood Donor Clinic

Staff Parkade

Public Parkade

Aberhart Centre

CP ➤

Corbett Hall

Cro Can ss Institcer ute

83 AVE

Edmonton Clinic South

117

86 AVE

Zeidler Ledcor Centre

117 ST

HRIF

112 ST

Building

114 ST

CSB Clinical Sciences

Heritage Medical Research

Katz Group Rexall Centre for Pharmacy & Health Research

ABC Aberhart Centre

82 AVE

P UNIV

ERSI

TY A VE

➊ IC3 PRE-ADMISSION CLINIC is located immediately to the right through this entrance ➋ Stollery Children’s Hospital EMERGENCY ENTRANCE ➌ The SURGERY CLINIC is in the Clinical Sciences Building, on the main floor behind the elevators ➍ The PARKADE and the hospital are connected by a pedway

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ABA Adm Adm Adu Ber Cas Clin Clin A A C D F M M

P P

S S Cys Day Day Der Diag EEG Em End Fac Fac Foo 11 C C H M Tr

• Map of The Stollery Children’s Hospital •

LEVEL

The PUBLIC UNDERGROUND PARKING entrance is on 114 Street side (LRT side) of hospital

Walter C. Mackenzie Health Sciences Centre

0E2 0E1

Elevators/Stairs

Security has LOST AND FOUND

Public Route

0D2

Washrooms

0G1

Parking

0H1

0D1

0H2

0C3

5 Shaw Interactive Theatre 6 ABACUS

0C2

0H3 / 0H4

0J1 ➤

3 Human Resources 4 Shipping & Receiving

Visit the Parking Office for PARKING PASSES

1 Security Office 2 Parking Office

N 0A2

0A6

7 Health Records

0A1

0A3

0C1 0A8 0B2

0B3 / 0B4 CSB

Clinical Science Building

0B1

University of Alberta Hospital •

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WALTER C. MACKENZIE HEALTH SCIENCES CENTRE Stollery Children’s Hospital • Mazankowski Alberta Heart Institute

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• Map of The Stollery Children’s Hospital •

LEVEL

Walter C. Mackenzie Health Sciences Centre

Elevators/Stairs/ Escalator

1A6 EMERGENCY ENTRANCE ➤

Medical Sciences Building

1K Zeidler Ledcor Centre

Public Route 1E

Information

1 114 St Entrance 2 Stollery Entrance 4 Admitting

1 5

8 Bernard Snell Hall

$ ATM

To get to EEGN(1A5) AND STOLLERY DAY SURGERY (1A7) go in the 112 Street entrance and turn left immediately

1C4

57-3/8” 57-3/8 8”

1A1

1A5

1H 1A2

1C3

1C2

➋

STOLLERY ENTRANCE This entrance faces the LRT station on 114 Street. Immediately inside this door is the 1C3 PRE-ADMISSION CLINIC

F M O

5 Mazankowski Entrance 6 Emergency Entrance 7 112 St Entrance

3 MRI

1C1

1A7

OutPatient Residence

1A6 EMERGENCY

1A3

1A8

CSB

Clinical Sciences Building

HELPFUL NOTE: The 112 Street side of hospital faces Tim Hortons. The 114 Street side faces the LRT station TIP: If you are in the hospital looking for the Pre-admission Clinic, go to the Stollery Bear Elevators. 1C3 is in the rainbow hallway

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Adm Adm Ber Cas Clin A

➤

Washrooms

MAP REF.

➤

➏

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P P P

T Cys Day Day Dia ECG EEG Em End Foo 1 C H M T

• Map of The Stollery Children’s Hospital •

LEVEL

Walter C. Mackenzie Health Sciences Centre

Elevators/Stairs/ Escalator

➤

MAP REF.

➤

PEDIATRIC AMBULATORY CLINIC (2E) To easily access this clinic, take the north elevator to the 2nd floor

Medical Sciences Building

Zeidler Ledcor Centre

Public Route Atrium Area

Washrooms

1 John W. Scott Health Sciences Library 2 Faculty of Medicine and Dentistry

2E 4

2G ➤

Pedway to Parking

3 Diagnostic Imaging

$ ATM

2 2H

2C1

3 7

2J2

2G2

2A1

2A2

2C2

2C3

2A5

2A6

2A3 2A9

2A6 2A7

2B Out-Patient Residence

CSB

Clinical Science Building

A map is located at the back showing the route from the clinic to DIAGNOSTIC IMAGING

➌

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• Map of The Stollery Children’s Hospital •

LEVEL

➊

Walter C. Mackenzie Health Sciences Centre

Elevators/Stairs/ Escalator

3A1 PICU – use the phone on the wall to call before entering. Push the silver circle button and wash your hands when entering and exiting

Public Route Atrium Area

➤

Washrooms

3A1

➊ ➋

3A2

3A9

3A3 3A5

3A7 / 3A8

3B 3A6

CSB

Clinical Science Building

3A3 NICU – all visitors must stop WALTER C. MACKENZIE HEALTH SCIENCES CENTRE at the main desk 3RD FLOOR WAY-FINDING University of Alberta Hospital • Stollery Children’s Hospital • Mazankowski Alberta Heart Institute

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The Compass

• Map of The Stollery Children’s Hospital •

LEVEL

➎

4E2 NEURO ONCOLOGY CLINIC

Walter C. Mackenzie Health Sciences Centre

SCHOOL

MAIN GLASS ELEVATORS

Elevators/Stairs Public Route

HELPFUL HINT: The hospital is organized in alphabetical order. In the SE corner you start with the A-units. As you continue to the right the units go from A to G and the number represents the floor

Atrium Area Washrooms

1 Level 4 Atrium, Labyrinth &

2 Guru Nanak Dev Healing Garden

NKF COFFEE STATION

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Patient Library

4A2

4A5 / 4A6 4A4

4A9

HEALING GARDEN STOLLERY BEAR ELEVATORS

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4A7/4A8

CSB

Clinical Science Building

4D has an “under the sea” theme. Your child will come here if they don’t go to ICU. The waiting room just outside 4D is a good place The FAMILY ROOM has computers, WALTER C. MACKENZIE HEALTH SCIENCES CENTRE to sit during OR pamphlets and a sitting room THE BEACH University of Alberta Hospital • Stollery Children’s Hospital • Mazankowski Alberta Heart Institute

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• Map of The Stollery Children’s Hospital •

LEVEL

Walter C. Mackenzie Health Sciences Centre

Elevators/Stairs Public Route

Atrium Area Washrooms

5G4 PEDIATRIC UNIT

Chapel/Prayer Centre 5G

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N 5H 5A2 5A1

5C 5B

5A5 / 5A6

5A4

5A9

5A7 / 5A8

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Clinical Science Building

University of Alberta Hospital •

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WALTER C. MACKENZIE HEALTH SCIENCES CENTRE Stollery Children’s Hospital • Mazankowski Alberta Heart Institute

The Compass

• Map of The Stollery Children’s Hospital •

GENERAL DIRECTORY

LEVEL ABACUS Administration Admitting & Registration Adult Echocardiography Bernard Snell Hall Cashier’s Office Clinical Engineering Clinics A.H. Owen & Family Stroke Prevention Clinic Adult Pre-Admission Clinic Cardiac Outpatient Services Dental Clinic Family Medicine Clinic Medicine Clinic Metabolic Clinic

Pediatric Ambulatory Clinic (Stollery) Pediatric Pre-Admission Clinic (Stollery)

Seniors’ Clinic Surgery Clinic Cystology Day Surgery Day Ward Dermatology Clinic Diagnostic Imaging EEG Lab (Radiology) Emergency Department Endoscopy Facilities Management Faculty of Medicine & Dentistry Food Services 112th Street Grill Cafeteria Caffe Fantini Healthy Trendz Cafe Mr Sub Trendz Express

University of Alberta Hospital •

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0 1 1 1 1 1 0 1 2 2 2 1 2 2 1 1 CSB0 2 1 1 1 CSB2 2 1 1 1 0 2 1 1 2 1 1 1

LEVEL Friends of the University Hospital (Volunteers) Gift Shops

Bearyland (Stollery)

The Friends Gift Shop Health Records Kaw-Kaw-Koo Aboriginal Gathering Room Lab Medicine Libraries John Scott Health Sciences Library Patient Library Lost & Found (Security) McMullen Art Gallery MRI (Magnetic Resonance Imaging) Outpatient Lab Outpatient Residence Parking Office Pharmacy (Rexall Outpatient Pharmacy) Physiotherapy (Rehabilitation Services) Plaster Room Prayer Centre/Chapel Psychiatric Services Radiology (Diagnostic Imaging) Rehabilitation Services Renal Dialysis Security Shaw Interactive Theatre Sigmoidoscopy Social Work Speech Pathology & Audiology Spiritual Care and Multicultural Services

Stollery Children’s Hospital Foundation The Family Room Transplant Clinics University Hospital Foundation Urology (Cystoscopy) X-ray (Diagnostic Imaging)

1 1 1 0 5 4 2 4 0 1 1 1 OPR 0 1 1 1 5 1 2 1 5 0 0 1 1 1 1 CP 4 CSB1 1 1 2

WALTER C. MACKENZIE HEALTH SCIENCES CENTRE Stollery Children’s Hospital • Mazankowski Alberta Heart Institute

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DIRECTIONS TO DIAGNOSTIC IMAGING AND MRI FROM THE PEDIATRIC SURGERY CLINIC

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STEP 1 Turn right coming out of the Pediatric Surgery Clinic.

STEP 2 Continue down the hallway and turn left at the exit sign.

STEP 3 Go straight all the way to the doors.

STEP 4 Go through these doors.

STEP 5 Go straight through these doors and head to the left.

STEP 6 Walk ahead, past the CafĂŠ, through the doors.

STEP 7 Continue through these doors and look to the right.

STEP 8 Take this elevator to Level 2.

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â&#x20AC;˘ Directions to Diagnostic Imaging and MRI from the Pediatric Surgery Clinic â&#x20AC;˘

STEP 10 Continue down this hallway and turn right at the end and go straight.

STEP 9 Once off the elevator, head straight through these doors.

STEP 11 You have arrived at Diagnostic Imaging 2H. Check in at the registration desk. Diagnostic Imaging is the area you will go to if your child requires a CAT scan. If you are looking for the MRI department please take Stollery Elevators immediately in front of the Diagnostic Imaging to the main floor.

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STEP 12 On the main floor, you will see Admitting and Registration to the right of the elevators. Walk in that direction.

STEP 13 You will see this sign straight ahead.

STEP 14 Follow the arrow to the right and walk to the end of the hall. At the end of the hall, turn right. You will see a set of sliding doors and glass blocks. If you see this, you are headed in the right direction.

STEP 15 Right before you reach the doors, you will find the MRI department on the left-hand side. You made it!

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Notes

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The Neurosurgery Kids Fund is a group of professionals who are dedicated to enriching the lives of children with neurosurgical conditions, supporting their families and providing world-class neurosurgical care at the Stollery Childrenâ&#x20AC;&#x2122;s Hospital in Edmonton, Alberta. The mission of the NKF is to help pediatric neurosurgical patients and their families navigate their medical journey with as much support, information and resources as possible. For more information, visit neurosurgerykids.com or call (780) 913-7346. @neuro_kids

facebook.com/neurosurgerykids Cover illustration by CHRISTIANE BEAUREGARD