In the Know Issue 23

know in the

understanding the cancer experience

Children & Cancer Survivor Stories Local Resources Candlelighters of El Paso Creative Kids

Issue 23 complimentary magazine

BOARD OF DIRECTORS Gordon L. Black, M.D., Honorary Michele Aboud Robert Ash Patricia Carter, RN Ted Edmunds Sam Faraone Jeanne Foskett Monica Gomez Dan Olivas Irene Pistella Shelly Ruddock Ken Slavin Polly Vaughn Patti Wetzel, M.D. Steve Yellen EXECUTIVE DIRECTOR Patricia Tiscareño PROGRAM OFFICER Jutta Ramirez DIRECTOR OF MARKETING AND COMMUNICATION Izzy Mora OFFICE MANAGER Cindi Martinez ADMINISTRATIVE ASSISTANT

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As I pen this editorial for the 23rd issue of In the Know: Understanding the Cancer Experience, it is in between swim laps, hurdle jumps, balance beams and outpacing the competitors. No, I am not a tri-athlete, but rather an arm chair cheerleader for the American team at the 2012 London Olympics. Like many of you, I am cheering, holding my breath and tearing up during the presentation of the gold under the American flag and the playing of our National Anthem.

The dictionary defines the gold medal as a noun – a trophy that is usually awarded for winning first place in a competition; a prize or; something given as a token of victory.

How fitting that the ribbon symbol for Childhood Cancer – the subject of this issue of our magazine – is the Gold Ribbon. According to the National Cancer Institute, there are nearly 12 million cancer survivors who are alive in the United States, at least 328,000 of whom were originally diagnosed when they were under the age of 21. Advances in cancer treatment mean that today almost 80 percent of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. A gold medal victory, indeed!

We dedicate this issue to the unique trials and triumphs that accompany a childhood cancer diagnosis.

In her interview with childhood cancer survivors,

5 page

in the

is published by the

Rio Grande Cancer Foundation 10460 Vista del Sol, Suite 101 El Paso, TX 79925 (915) 562-7660 fax (915) 562-7841 www.rgcf.org by

Snappy Publishing Ted Escobedo, Publisher 240 Thunderbird • Suite C El Paso, Texas 79912 (915) 820-2800

Monica Garza shares personal stories from now adult survivors of how cancer has impacted their lives.

Michelle Brown lends advice to parents of children with cancer with practical information about maintaining normalcy throughout the experience.

A sincere thank you to Beate Burdett of the El Paso Candlelighters who contributes a personal view of her work with this outstanding non-profit organization and how it works to enriches the lives of children with cancer. The Rio Grande Cancer Foundation is proud to be a small partner in some of the many activities Candlelighters provides to this special group of children.

In the Know has in the past featured Creative Kids, Inc. and their art programs in the El Paso community, however, Erika Aragon takes a different spin in this interview with Stephen and Andrea Ingle on the personal side of their work with children in treatment; how they deal with both the triumph and the loss that accompanies their daily efforts.

Thank you for all your comments and requests for additional copies of our issue on the subject of Toxins.

One reader expressed concern that we were scaring people with the overload of information on the many toxins in our environment. Our sincere apologies if we placed you in that position; our intent in publishing In the Know: Understanding the Cancer Experience is to offer to you useful tips for making positive changes in your life – one small step at a time.

Patty Tiscareño Executive Director

FEATURES

Maggie Rodriguez

know

this issue:

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Communication and Education about Cancer

by Michelle J. Brown

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Growing Up with Cancer

Everyone Take Your Seats

Lighting the Way

Cancer during childhood years colors who we become as adults. We hear first hand from some remarkable survivors about the lessons they have learned.

Going to school is challenging for many young students. With a cancer diagnosis, the experience becomes that much more difficult. Here we take you through the school days, with a little help from a monkey too!

Candlelighters has become the organization to go to when you have a child with cancer. In this feature, we explain why.

DEPARTMENTS In The Green House

22

What I Know Now

23

Those submitting manuscripts, photographs, artwork, or other materials to In the Know for consideration should not send originals unless specifically requested to do so by In the Know in writing. Unsolicited manuscripts, photographs, and other submitted materials must be accompanied by a self-addressed overnight delivery return envelope, postage pre-paid. However, In the Know is not responsible for unsolicited submissions. ©2012 Rio Grande Cancer Foundation. All rights reserved. No part of any article or photograph contained in this magazine may be reproduced in any way without the written consent of In the Know.

In the Know assumes no responsibility whatsoever for errors, including without limitation, typographical errors or omissions in In the Know. Editorial or advertising content in In the Know does not necessarily reflect the opinions of the publishers. In the Know assumes no responsibility for the products or services advertised in this magazine. Publisher reserves the right to edit any material or refuse any advertising submitted.

5

Growing Up with Cancer Survivor Stories

Cancer is an overwhelming experience for anyone to face at any age. For children, it leaves an indelible impression that impacts who they become as adults.

by M贸nica M. Garza with introduction and additional material by Michelle J. Brown

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7

Growing Up with Cancer

Your child has cancer.

There are no words more frightening to any parent. But most don’t realize that cancer is the #1 disease-related cause of death for children under the age of 14 years, next to accidents. While significant progress against childhood cancer has been made (up to 70% of all children with cancer can be cured), cure rates for some types of pediatric cancers remain below 50 percent.

Over 20,000 children (in the United States) are diagnosed with cancer each year. That's a classroom full of children every single day, year after year. In fact, one out of every 250 young adults living in the U.S. will have survived childhood cancer.

Jennifer’s story

Having been diagnosed with a grapefruit-size Wilm’s tumor, a rare cancer of the kidney affecting mostly children, at the age of 2, Jennifer Lopez doesn’t recall the struggle — she relies on her mother for the memories — but she does know that it changed her life.

Frequent stomach aches and a complete loss of appetite led her young parents, then 25 and 27, to take their daughter to a doctor, beginning the path to diagnosis and a trying battle with cancer. Living in Mexico at the time, the Lopez family, in order to seek treatment for the tumor, made the difficult

decision to split up. Her sisters, then 6 years old and 6 months old, couldn’t have understood the situation.

The next year and a half after diagnosis saw Jennifer in and out of hospitals for treatment — chemotherapy, followed by surgery to remove her kidney and the then-golf-ball-size tumor — and additional surgeries needed due to symptoms of treatment. With little to no memory of the arduous ordeal, Jennifer does remember how her mother virtually lived in the hospital with her during her stays, for weeks at a time, willing to give her all to her second child.

“My mom and I moved first and lived here [in El Paso] alone for about a year; then my dad eventually moved to El Paso with my sisters,” said Jennifer. “My mom tells me that year we were by ourselves was obviously particularly difficult, especially because my younger sister was only six months old at the time.”

And though the time was trying, it changed both her

and her family’s lives for the better. As an adult, Jennifer said, she feels that having had cancer as a child made her grow up faster.

Today, a third-year Metallurgical and Materials Engineering student at the University of Texas at El Paso, she believes she is more mature and independent than she would have been otherwise, and it has made her family even more tight-knit.

“Thankfully everything turned out for the better and I am so thankful for my family,” Jennifer said. “It’s hard to imagine how my life would be if I hadn’t gotten sick; everything would be so different.”

Looking toward her future, Jennifer knows that the cancer might have a lasting impact on her health, but she maintains an optimistic attitude.

“I have one friend [who had the same type of cancer as a child] … a doctor told her she wouldn’t be able to have kids,” she said. “For me, if I couldn’t have kids of my own, I would adopt.”

Laura’s story

Like Jennifer, Laura Cruz-Acosta maintains an optimistic attitude about her life after cancer.

Laura was diagnosed with thyroid cancer at the age of 12 after her grandmother noticed an Adam’s-applelike lump in her granddaughter’s throat.

“I remember her pushing my neck up and asking me what the lump was,” she recalled. “I was embarrassed because it was an abnormality and so I waved it off, but thankfully she told my mom.”

A trip to the pediatrician led to diagnosis and the beginning of a difficult time for the family.

The normally exuberant 12-year-old found the experience frightening and very difficult, suffering through iodine radiation treatment, quarantine and subsequent surgery to remove the remainder of her radiated thyroid.

“Being quarantined was

awful,” she recalls. “My mom would come visit me and stand in the doorway, because she couldn’t come into the room. I was radioactive. I remember I would cry myself to sleep.”

A token of her early experience with cancer, the 34-year-old keeps a white stuffed rabbit that was given to her by an aunt after the treatment and surgery as a means to remember the experience.

“I can’t get rid of it, because it’s a reminder of that part of my life,” she said. “It was a rough time, but I came through it with my family’s support and love.”

Laura’s childhood experience continues to impact her life heavily. As a result of treatment and surgery to remove the remainder of her thyroid, she has had to take a synthetic thyroid hormone, without which her health is greatly affected.

And the threat of experiencing cancer as an adult is a constant fear, with doctors having warned her of the possibility of a recurrence as lung or breast cancer. Adding to the fear is the minor recurrence she experienced in 2000.

“At first, I was furious,” she said, recalling the doctor telling her they had found

something small. “But when I had to go back into radiation treatment, I took the approach of it being a vacation. I was able to get away from work. I got to sleep late, watch TV and read magazines for three days.”

As with anyone who has experienced cancer as a child, Laura’s experience left its mark on who she has become as an adult, physically due to ongoing health concerns, but in other ways as well.

“Emotionally, I’m more attuned to cancer and its impact,” she said. “I think people, the general public, might be desensitized toward the ongoing seriousness of cancer.

Survivors should continue to share their experience and keep faith that there will be a cure for all cancers.”

Childhood cancers are mostly those of the white blood cells (leukemia's), brain, bone, the lymphatic system and tumors of the muscles, kidneys and nervous system. Each of these behaves differently.

The causes of childhood cancers are largely unknown. Treatment is often lengthy, and always time-consuming. Some diagnoses are treated on an outpatient basis for over three years; others require lengthy inpatient stays.

8

Growing Up with Cancer Frank’s story

Frank Gonzalez was a 16-year-old high school junior looking forward to the homecoming dance, when a lump at the back of his head changed his life.

Frank didn’t think much of the lump when he first discovered it.

But after a haircut in preparation for the dance, with the shaggy hair that once hid the lump gone, it was clear to the teenager’s mother that the lump needed to be evaluated by a professional.

Doctors assured Frank and his family that the lump, while needing to be removed, was nothing serious.

Not wanting to miss school, the Gonzalez family decided to schedule the surgery for the Thanksgiving break. A phone call not long after the surgery changed the family’s lives.

“The following Monday,” Frank recalled, “they’d analyzed it and it came back as cancer.”

Subsequent visits to an oncologist and an unexpected diagnosis of nonHodgkin’s lymphoma led to drastic changes for the teenager.

He left school on the recommendation of his doctors, due

to concerns of immune deficiency and neutropenia, a low count of certain white blood cells that are integral to fighting infection.

The remainder of the school year was devoted to treatment, as Frank spent months in chemotherapy and then radiation treatment.

Dealing with chemo, radiation therapy and the transition from high school to home schooling would have been trying on any teenager and their family, but the Gonzalez family experienced even greater heartbreak during an alreadydifficult time.

Frank’s father passed away, making the ordeal much more significant.

Frank returned to school for his senior year and graduated on time.

Having gone through diagnosis, treatment and the grief of losing his father shaped his perspective, which greatly differed than that of his peers.

While other teenagers were likely worried about popularity, crushes and other typical teenage concerns, Frank wasn’t as wrapped up in them anymore.

“I became a lot less bothered by stupid things,” he said. “The dramas of high school weren’t a big deal to me.”

And his new perspective seems to have endured into adulthood. These days, the 27-year-old recognizes how his experience with cancer changed him.

“I think I’m much more down to earth,” he said. “If things aren’t going well — problems life tends to throw at you — I don’t get irritated by negative situations anymore.”

Anxiety over recurrence can be a concern for adults who survived

cancer as a child, but Frank is optimistic.

“For me, after the second year [of checkups], I actually felt it was annoying,” he says. “I felt fine. But my mom insisted.”

As monthly checkups turned into less frequent occurrences, Frank didn’t think about his childhood bout with cancer much. In fact, this year, the 27-year-old will be officially declared cured of nonHodgkin’s lymphoma.

“I know I’ve been [cured] for years,” he said, relieved at no longer having to make the visits for testing.

As an adult, Frank feels that his overall health has been normal and cancer-free, having experienced no noticeable side effects despite the risks of treatment.

And although he was told his treatment carried little risk when it came to creating his own family, Frank said that he is a little concerned about the possibility of not being able to be a father, but he knows that he’ll be able to deal with whatever comes.

While the experience of childhood cancer is as varied as the children who go through it, a common thread can be found among survivors: optimism.

It is this optimism, in tandem with the love and support of family, that often helps these young warriors face a very grown-up experience that molds the full lives they have ahead of them.

9 About 4,000 children die from cancer each year. That's 11 children every single day, every single year.

Like adults, early detection remains paramount. Be aware of the potential signs of childhood cancer and, when in doubt, see your physician/healthcare provider.

Continued, unexplained weight loss Headaches, often with vomiting, at night or early morning Increased swelling or persistent pain in bones, joints, back, or legs Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits Development of excessive bruising, bleeding, or rash Constant infections A whitish color behind the pupil Nausea that persists or vomiting without nausea Constant fatigue or noticeable paleness Eye or vision changes which occur suddenly and persist Recurrent fevers of unknown origin

5 tips to help children cope & hope Cancer often sneaks up when you least expect it, turning your world and your family's world upside down. Young children have a very difficult time learning to cope with cancer becoming part of their life because of all the changes the family will experience and the numerous questions they have.

While coping with cancer is in no way easy, there are 5 tips that can help your children cope when cancer has come into your family's world.

1. Let them know what's going on Explain to your child what is going on.

Use age appropriate terms for the children to understand. Depending on your child's age, you should determine just how much information you will share with them about the severity of the cancer. Let the rest of the children know it will be a very difficult time for everyone, which is why the support of the family is essential. It is very important that your child knows about the situation so they are not caught off guard by the cancer and the changes.

2. Talk about the changes

5. Spend quality time together

You need to talk about the changes that are going to occur while the family copes with cancer. Explain the physical changes that will occur, such as hair loss, decreased weight, and fatigue.

Preparing the children for what they are going to see will make the situation less scary for them once it does occur.

While coping with cancer it is vital to spend quality time with all the children.

This is absolutely essential for a child's sense of safety and overall well-being.

While it may be difficult to spend quality time together with all the doctorsâ&#x20AC;&#x2122; appointments and treatments, spending time together will build a strong family unit, which will increase support for one another while the family copes with cancer.

Source: Alyssa Ast, Yahoo Contributor Network

3. Remain honest While helping children cope with cancer, it is important you remain honest with them to keep their trust. If they ask you if you are scared, it is ok to tell them you are, but reassure them that everything will be all right. By remaining honest with your children while coping with cancer they will feel safer because they will know they are in a trusting environment.

4. Maintain a routine Children feel safe and comfortable when they are products of a routine.

Even though cancer is turning your family's entire world upside down, try to maintain a daily routine as much as possible. This will show your children that there is a tomorrow and although, the family is going through drastic changes, the family will continue to maintain a certain sense of normalcy.

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11

Communication and Education about Cancer

by Michelle J. Brown

â&#x20AC;&#x153;Thereâ&#x20AC;&#x2122;s a Monkey in My Chairâ&#x20AC;?

A

ttending school helps children with cancer feel normal. Children who continue their schooling, whether in the hospital, at home, or in school, are able to retain part of their regular routine and connection with their peer group through the shared experience of education. Whether or not they attend school in the traditional sense, keeping up with schoolwork and learning helps to give children with cancer a sense of stability and normalcy in a hectic and often frightening time.

Educators have a significant role to play in encouraging children's integration into a normal life routine. At the same time, it is natural for teachers to have concerns and worries about having the child in their classroom. Educators need practical strategies and support to help children with cancer during diagnosis, and before, during, and after treatment.

Communication with parents and those directly involved with the child's needs is a vital aspect in supporting the child with cancer.

Principals and teachers should take an active role in establishing communication as soon as possible rather than in reaction to a crisis. They should maintain this interaction throughout the child's formal school years. As students mature, they may be able to assume some responsibility for communication.

As the school administrator, the principal is the continuing link with the child and family and must keep informed of and assess information to be communicated within the school, as this changes over time.

Educators can facilitate students moving from elementary to secondary school by establishing good communication between the two schools.

To prepare for talking with the student about their illness, which can be difficult, teachers should find out from parents what the student knows about their illness and how much parents want them to know.

Students may know they are very ill and be afraid that they might die, but may be too scared to talk to their parents.

Sometimes an independent counselor, such as a teacher or psychologist, can help relieve anxiety and ease communication among family members about these difficult issues.

Communication Tips Initiate and keep in regular contact with the parents to be current on the child's progress at the hospital, at home, and at school.

Contact the related treatment and support team, as appropriate, to get information on the impact of the disease on the student and family.

Visit the child in the hospital and at home to maintain the link with school, and offer support to parents.

With parental permission, provide all school staff with sufficient information and understanding of the student's condition so they can contribute to a safe and caring learning environment as the student progresses through their illness.

Returning to School The student may initially return to school on a part-time basis.

This transition takes place slowly and depends on the rate of recovery and the ability of the school to provide appropriate support.

Educators must work closely with parents and medical staff to

plan the transition. Important decisions should be made about what to tell other children and how much the child can be expected to achieve when they first start back. With older children it is important that their view be respected when their return to school is discussed.

Make the necessary preparations to deal with students who are reluctant to return to school.

Look out for potential learning disabilities.

Observe any physical problems the student may be having at school and respond appropriately.

Recognize emotional and behavioral changes, follow up with parents, and access professional assistance, if necessary.

Through this amazing program, each child is provided with a "monkey kit" which includes a big stuffed monkey that takes their place in school when they are unable to be there. The kits include the monkey with a backpack, a book to help teachers explain to students the situation their classmate is facing and how it affects them, teacher companion guide, along with other items that can be utilized by the child and/or their classmates. All kits are sent out at no cost to the families or hospitals.

Home Instruction Home instruction is most useful in the period after diagnosis.

Children go in and out of hospital so much that attending school regularly is impossible. Attendance varies with each individual case; however, it is possible for them to miss as much as three to twelve months or more of school after diagnosis.

Each province and school district differs in the resources they have available for home instruction. Some are able to offer limited support as soon as it is needed, while others do so only when children miss a specified amount of time.

Principals should be familiar with the policies and procedures in place for home schooling and records of attendance within their schools and boards. * Recognize the student's ability, e.g., short concentration span, and program accordingly. * Collaborate with the home tutor who can be a bridge between home and school.

Source: childhoodcancer.ca/educators-guide/practical-strategies

In addition to each "Monkey Kit," each child will be given online access to Monkey Message.

Monkey Message is an online component that allows the sharing of pictures and documents to ensure the line of communication stays open between the patient and the classroom. Included in the Monkey Message portal are regular educational activities for the classroom and patients to do that help to foster interaction of students while incorporating key educational tools.

To order: monkeyinmychair.org

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People and Places you need to Know in El Paso when your child has cancer

Creative Kids AIM Program

The Children’s Hospital at Providence

El Paso Children’s Hospital

www.creativekidsart.com

www.sphncom

www.elpasochildrens.org

The J. Leighton Green, Jr., Cancer Resource Center

The Green House

Ronald McDonald House

Locks of Love www.locksoflove.org

The Leukemia Children’s and Lymphoma Grief Society Center www.lls.org

www.rmhcelpaso.org

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www.cgcelpaso.org

www.rgcf.org

For a hospitalized child, the absence of routine, the school environment and a disrupted home life can be overwhelming.

Enter Creative Kids who offer Project AIM (Arts in Motion) to pediatric oncology patients at Providence Children’s Hospital.

Through this program, the patients are engaged in a visual arts curriculum ranging from painting on canvas, printmaking and water media to graphic design classes on iMac G-5 computers on which they learn to navigate Adobe Photoshop and Illustrator. An important component of the program is showcasing the artwork created by these children in various galleries throughout the community. The exhibitions serve two great purposes: to make the public aware of the depth of thought, inspiration and creativity that these children have to offer, and to provide opportunities that allow the children to feel a sense of fulfillment and accomplishment in the face of great adversity.

The billboard for the Children’s Hospital at Providence boasts having served a gazillion children in its service to the El Paso community! The staff of the Children’s hospital receives specialized training in the treatment of children. Many members of the nursing staff have received PALS (Pediatric Advanced Life Support) certification.

Additionally, the hospital hosts Children's Specialty Clinics which teach children and their families how to manage and live with a chronic illness while also addressing those with multiple health problems.

At EPCH, the belief that patient- and family-centered care is an essential part of each family’s experience is paramount. Family-centered care is an approach to health care where patients, families and health-care professionals work together to best meet the needs of the child and the entire family. In response to the unique needs of pediatric oncology patients, the department of Hematology and Oncology at the El Children’s Hospital has private patient rooms, Outpatient Infusion Center, Kid and Teen Play Rooms, Family Lounge Areas and 24/7 attendees who specialize in Pediatric Hematology and Pediatric Oncology.

The J. Leighton Green, Jr. Cancer Resource Center is affectionately named for the El Paso attorney whose battle with Acute Myeloid Leukemia (AML) ended in 1998. The “Green House” name itself evokes light, hope, help and healing. The Green House provides cancer, health and wellness information for patients, caregivers and medical professionals in various mediums – books, pamphlets, audio and video offerings as well as a standalone, bilingual touch screen computer (Cancer HelpNet™) dedicated exclusively to cancer related topics. In this, the only dedicated health library in the region that is free of charge, patrons can relax in a quiet, comfortable environment and research their various questions about the cancer experience.

The cornerstone program of RMHC of El Paso, the Ronald McDonald House offers families whose children are being treated at local medical facilities a “home away from home”. Located minutes from the Medical District, the stateof-the-art House creates an environment of love and concern for families with seriously ill children. The 10suite home offers cozy private rooms, plush living/visiting areas, a spacious industrial kitchen, as well as the support of a warm, caring staff. The first Ronald McDonald House was located at 1017 Montana, known to passersby by the waving Ronald McDonald outside the gorgeous, Victorian home. As time passed and the need grew to accommodate more families, the Board of Directors, with the help and generosity of the border community, opened the doors of the new home, located at 300 E. California Avenue, in 2002.

Operating under the mission to return a sense of self, confidence and normalcy to children suffering from hair loss, Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. By utilizing donated ponytails to provide the highest quality hair prosthetics to financially disadvantaged children, Locks of Love meets a unique exclusive need for children. Many of the children using LOL services suffer from hair loss due to chemotherapy and other medical conditions such as alopecia areata. The prostheses provided help to restore their self-esteem and their confidence, enabling them to face the world and their peers.

The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. As the world’s largest voluntary health agency dedicated to blood cancer, LLS funds lifesaving blood cancer research around the world and provides free information and support services. El Paso residents are served through the Albuquerque New Mexico office and some financial assistance is available through L&L programs.

A non-profit organization that provides healing and hope in a safe and loving environment for grieving children, teens and their families following the death of a loved one, the Children’s Grief Center exists to serve the needs of children dealing with grief and loss. By sharing their experiences and feelings in a peer support group, families learn that they are not alone and that there is hope for their future.

by Patty Tiscareño

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Cancer 180 – Because when cancer strikes, life does a 180

this remarkable event,” says Jutta Ramirez, Program Officer for the Rio Grande Cancer Foundation. “We will be working closely with a network of El Paso providers such as the El Paso Area Candlelighters, the El Paso Affiliate of Susan G. Komen for the Cure and the Leukemia and Lymphoma Society to help design and implement a program exclusive to young survivors”, she added.

Future issues of In the Know: Understanding the Cancer Experience will include news and updates about the conference.

Here is a list of some of the resources available to you as a young adult patient, survivor or caregiver.

AKP Foundation: The Always Keep Pedaling Foundation provides young adults with the means to use adventure sports to assist, inspire and energize a comeback from invasive cancer treatments.

American Cancer Society: offers a variety of programs, services and resources for patients, survivors and their families.

MD Anderson’s Cancer 180 Childhood Cancer Survivor Event comes to El Paso in 2013 Ask a cancer survivor how they find new meaning in life after cancer and you’ll get several responses. Some see it as an opportunity to assess their lives and make changes. Others call it a ‘wake-up’ call for taking charge of their health and wellness.

But for the cancer patient who is diagnosed at age 20 or 30, life is just beginning. So how does a young cancer survivor approach the question of living fully after cancer?

According to the Childhood Cancer Survivors Study (CCSS), the leading consortium in late-effects research, one in every 640 young adults aged 20 to 39 years old is a cancer survivor, which means that there are now about 270,000 childhood-cancer survivors in the U.S. As survivors age, it is important to monitor their health and provide updates about

potential ways to reduce the risks of late effect.

Enter the Cancer 180 program of the M.D. Anderson Cancer Center in Houston, Texas. The brainchild of Program Coordinator, Marisa Mir, Cancer 180 targets a largely overlooked population; young adult cancer survivors.

“Young adult survivors have needs unique to their age group that are broader in scope, longer lasting and more anxiety –laden than those of older survivors, due to the time of life at which they are confronted”, says Mir. The Cancer 180 program is a multipronged approach which includes social networking opportunities, educational activities and a web site to help young survivors move into adulthood and

beyond with the skills and support they need.

The Rio Grande Cancer Foundation is proud to be the local coordinator for the Cancer 180 conference which will be held in El Paso in June 2013.

Targeting such issues as • Education and employment after cancer • Fertility and body image • Long term survivorship challenges • Preventing a recurrence • Nutrition and exercise • Navigating insurance and legal rights • Chronic medical conditions The all day conference will offer networking for young adult survivors, caregivers, family and friends.

“We are so proud that M.D. Anderson has chosen El Paso as a host site for

Anderson Network: an MD Anderson Cancer Center based program that provides hope, support and understanding to patients, survivors and caregivers from others who have been there, regardless of where treatment is received Athletes 4 Cancer: dedicated to harnessing the healing power of the elements with the determination of the human spirit to impact lives affected by cancer through surfing, kiteboarding and stand up paddling camps.

Bright Pink: focuses on the prevention and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals through online forums and a peer support matching program.

LIVESTRONG: offers a variety of programs, services and resources for patients, survivors and their families; specific resources are available for young adults

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Organization lights up the lives of children with cancer Beate Burdett beate@candlelighterselp.org

Paint the world gold!

September is Childhood Cancer Awareness Month. In the U.S., childhood cancer is the #1 disease killer of children. Like most people, I didn’t know. I may have seen a story here and there about a child dying of cancer. But that it is the #1 disease killer was unknown to me. Childhood cancer is just not spoken about. It tends to be too difficult a subject to deal with.

I have seen all the pink ribbons creating awareness about breast cancer. I have even volunteered, walked, and donated in hopes of finding an end to cancer. I too have been frustrated, angry, and saddened that I had lost too many friends to cancer.

But children – children get cancer? So where are all the ribbons to symbolize childhood cancer? Like most people I didn’t know that there was a gold ribbon for childhood cancer until a friend invited me to join the board of Candlelighters.

From that day on my life changed, as the kids say it took a 180. I have been blessed. Yes blessed. Every day I get to know and spend time with these brave

warriors and their families. They have taught me courage; given me a deeper understanding of faith; to never quit or lose hope in spite of what things may look like; and they have taught me that today is what is really important. They have shared their triumphs, their struggles and their fears.

Nothing can prepare you for the words “your child has cancer.” Yet, every three and a half minutes somewhere in the U.S. there is a parent who hears those words. With these words, normal life stops and a difficult new journey begins; a journey that will test families physically, emotionally, spiritually, socially, and financially. Several of our moms have emphasized how alone they felt and how little public understanding there is. “When they see children without hair and their mouth covered…they stare and are afraid that what my child has is contagious,” explained one of our moms.

Our goal at Candlelighters is that “no child should face childhood cancer alone.” From the moment of diagnosis and throughout treatment Candlelighters is there to provide financial, spiritual, social and emotional support for children with cancer and their families.

I have seen first-hand how financial pressure further adds to an already stressful time. Every day one of our parents will call to get help with utility bills, rent, or gas money to drive back and forth from home to hospitals and to daily doctor appointments. During the first, inpatient, week of treatment the sum of income lost plus additional expenditure exceeds 50% of total income in over 45% of families. (British Medical Journal: “Financial burden of childhood cancer.”

Our parents attend weekly workshops on stress management, anger control, improving communication, care giving, and strengthening marriages. These workshops and the times of sharing are important to the parents. As one mom explained, “we have good days and then the next day can be really bad…life just changes so dramatically and getting together with other parents helps.”

Working at Candlelighters helps me to understand some of the day to day events that family members have to go through while caring for their child.

When our families come to the workshops it becomes a time to stop what I am doing and catch up with what is happening in their lives. To share

hugs, laughter, stories, and on occasion even some tears.

I have visited children in the hospital and learned a lot from the interaction between child and medical staff, parent and medical staff, child and parent, and parent and other caregivers.

One of my favorite times, and there are many, is camp.

Every year we hold two week-long summer camps – Camp Bravo for siblings and Camp Courageous for our kids with cancer. The excitement of getting ready for camp builds for weeks for staff, counselors, parent and kids. Camp is a time to be just a kid; not a kid with cancer. It is a time to make new friends; to challenge your limits; to rebuild your confidence and independence; to get away from the daily routines of dealing with cancer; and a time to have fun and laugh till your sides hurt. “I forgot about Thomas the Tumor for a moment and just had fun,” explained one of the campers.

Earlier this year, I sat in the hospital room with a very special young man and promised him that I would tell his story and all of his

friends’ stories. He wanted to teach kids, “to be strong; never take family, friends, or life for granted. Never give up on yourself and God. I want to show people that ‘even with the mountains and uphill battles’, you have to keep fighting and live your life to the fullest.”

I miss him and all of our angels dearly but I will keep telling their stories and someday, maybe someday, the world will be painted with gold ribbons and a cure for childhood cancer will be found.

Know more>

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Know more>

FINANCIAL ASSISTANCE BUNDLE OF HOPE is designed specifically for newly diagnosed children. This duffel bag style care package includes comfort items such as a blanket, a stuffed animal and literature specific to the respective child’s form of cancer. It also includes pertinent items like a thermometer, pillbox, hot/cold pack, toiletries, a monthly planning journal and other miscellaneous items needed for daily care.

PRIZE BOX is a program through which we provide small toys, stuffed animals, etc., for clinical or traumatic procedures, birthdays, and other celebrations.

SOCIAL/RECREATIONAL SERVICES Children with cancer are first and foremost still children and want to be treated the same as children without cancer. They want the opportunities to run, play, swim, and enjoy being with other kids. Candlelighters gives children, their siblings and their families a chance to enjoy normal childhood activities.

Our week long camps – CAMP COURAGEOUS, for our kids with cancer, and CAMP BRAVO, for the siblings,

are an opportunity for them to go horseback riding, participate in sports, games, campfire sing-a-longs, crafts, and the usual antics that are traditional

CARE-A-VAN is a shuttle service available to assist children and their families with local transportation.

EMERGENCY LIVING provides funds to families who are unable to cope with basic living expenses such as rent, utilities, auto repair, etc.

EMERGENCY MEAL VOUCHERS are provided for families to use at the hospital cafeteria while their child is hospitalized or on extended clinic visits.

EMERGENCY MEDICAL FUNDS are provided for families that require at all camps. Camp is not just a place to escape rather it is a place to develop character. According to research, when children with cancer attend camp, they develop better self-concepts, enhance their self-esteem, gain control of their experiences, learn new activities, and develop character.

For our younger ones, we have CAMP LITTLE ONE, a one day minicamp. A place to play; a place to giggle; a place to be a kid; and a place to feel special.

Our TEEN RETREAT is a great way for teens to share their unique experiences.

We rent a huge condo where a dozen initially shy teens come together for snow tubing and all night conversations. By the time they come home, new strengths to persevere and friendships have been discovered.

Our parents, too, enjoy some respite.

The weekend starts with a special

monetary assistance with wigs, personal care equipment, and prescription drugs.

EMERGENCY TRAVEL FUNDS are provided for families needing assistance with out-of-town transportation for medical treatment.

EMERGENCY FUNERAL FUNDS are available to assist families when their child has lost his or her battle with cancer.

FOOD PANTRY is a complete pantry of canned foods and staple items. In addition, funds are available for families private time were couples are pampered and given an opportunity to reconnect.

The next day, they come together as a group and guest speakers provide sessions on communication skills, anger management, coping, stress relief and relaxation techniques. During CAMP UNITED we encourage parents to reestablish their commitment to each other and through a united front fight the battle of childhood cancer together.

THERAPEUTIC/EMOTIONAL SERVICES ACTIVITY CENTER is a safe, educational, and interactive environment for patients and their families while the children wait for test results or while seeing their physician. To help our families feel at home, we offer a waiting area, library, and internet services as well as a play area with activities such as arts and crafts, videos, and computer games. We are staffed with a Family Case Manager with a degree in social psychology. Experienced in early childhood development, she helps the children and their family members cope with their treatment through techniques that include therapeutic play, creative art therapies, and self expression activities.

Our program is also structured to provide therapeutic services to help reduce the stress and strain on the family and the marriage.

to purchase perishable items. As of March 2009, we have become a member of the West Texas Food Bank and can offer our families more than just staple items.

ADOPT-A-FAMILY is designed to help our families during the holidays. Families receive food and gifts in an attempt to preserve the sense of connection and joy traditionally associated with the Holidays.

SCHOLARSHIPS is a program offering financial assistance to cancer survivors whose education was interrupted or delayed by cancer.

ESPERANZA PROGRAM provides training and support workshops to caregivers with a special focus on stress reducing techniques, communication techniques, and educational workshops focusing on childhood cancer, nutrition, exercise, finances, anger management and parenting skills. These workshops are offered in English and Spanish. The workshops provide critically needed emotional and psychological assistance to help the families during time of overwhelming stresses and concerns.

REMEMBER ALWAYS is a one-day seminar providing information to individuals who have lost a child to a catastrophic illness such as cancer. For many parents, life after the child’s death is unbearable; thus we explore different programs and activities that help families live beyond the death of their child.

SCHOOL RE-ENTRY CONFERENCE informs teachers, school nurses, principals, counselors, and the community at large about the difficulties that may arise from misunderstanding the physical, academic, and emotional repercussions or side effects of childhood cancer. Many of our children must pursue an education home bound or in the hospital. When the joyous occasion arises to be readmitted into the public school system, not everyone is prepared to deal with it. Our focus is to reunite and effectively integrate the child back into the system through an educational opportunity of understanding for the institution.

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mind, body, & soul

Aaron, Age 17 Testicular Cancer

Ayanna, Age 9 Leukemia

Creative Kids founders reap many benefits yet cope with loss

By Erika Aragon There are many words used to describe artists and art teachers. Brave is not the word that might immediately come to mind, but in the case of Andrea and Stephen Ingle it should be. It seems fitting word for two people who chose to devote their lives to bringing art to the children facing terminal diseases in El Paso.

Creative Kids, the non-profit organization co-founded by Andrea and Stephen, brings art in different forms to the pediatric oncology patients of Providence Memorial Hospital. Their programs incorporate assorted mediums and curriculums specifically designed for the varying ages and skills of the patients they work with in the hospital and in their downtown studio.

Despite the positivity that comes from both of them, they encounter death and illness daily but have never let that get in the way of their passion.

"They told us when we started, ‘Don’t get attached to the kids. Don’t get attached to their families.” We were like, ‘Ok,’ and we just jumped in.” recalls Andrea, but neither Andrea nor

Stephen have put a barrier between them and their young artists in the twelve years since this organization began.

“If you make art you can’t have a detachment. There’s this connection because you’re making stuff together and after time you learn about their family, their personalities, what they like, their favorite color, their favorite movie” says Stephen.

The sadness and negative feelings do not outweigh the effect that working with these children has on Andrea, Stephen and the staff of Creative Kids.

“It’s a gift to spend that quality time and to teach something that we love to do. They’re getting something out of it with the limited time they have,” Stephen acknowledges because the work that the patients have a chance to make with Creative Kids sometimes outlasts the artist who created it.

“Knowing that when these kids pass away that their legacy is left behind. It’s just nice that we have the memory to give to their families.” Andrea says.

Some of the work that doesn’t go home with the families is displayed in the gallery at Providence hospital.

However hopeful they are about the effects art has on these patients and families, they acknowledge the pain and sadness they have felt over the years.

When they speak of their former students they recall each of them by name and with an obvious love that they have for the time they were able to spend with each child.

“I don’t’ think we ever get over it. I’m thinking of the very first kid that ever passed away and I remember it like it was yesterday. His name was Gerard and he was amazing. He was 17 and just awesome. Of course, we were super close to him and his family and we weren’t supposed to,” Andrea remembers. “At that point I think we were there a year. So that was our first loss. We went this whole time and I remember getting to the hospital and we knew something was off.”

“That one wasn’t expected,” she continues. “With some kids you know.

There’s a decline and you kind of prepare yourself, but this one was from one day to the next and he was gone. I just don’t think you ever get over it.”

“Mainly, it’s very positive what we do.

But every once in a while, when one of

those kids passes away, it’s painful.”

Stephen says.

Living together and working at adjacent desks means that Andrea and Stephen completely understand what goes into moving Creative Kids forward, despite the inevitable sadness.

“Our outlet is cooking. We like to snowboard. Andrea hikes the mountain and I like to sleep.

Sleeping is good. “ Steve is an artist in his own right and has plans to return to painting one day, but sketches in the meantime. Andrea, with a background in education, struggles to describe her own artistic talents, but jokes, “Grants. I write grants. That’s my art form.”

Creative Kids has been recognized by the National Endowment of the Arts as a BestPractice Model and the work they do in the hospital and their studio is admirable. It would be an asset in hospitals around the country and the world, but El Paso is lucky to have the Ingles working with the kids of this community.

in the greenhouse

what I know now

visit www.rgcf.org These book selections are available at The Green House Resource Library MAIN BRANCH Del Sol Regional Oncology Center 10460 Vista Del Sol, Suite 101 El Paso, Texas 79925 562-7660

WEST CENTRAL: Las Palmas Medical Center 1801 N. Oregon El Paso, Texas 79901

EAST: Texas Oncology El Paso Cancer Treatment Center 7848 Gateway East El Paso, Texas 79915

CENTRAL: Texas Oncology El Paso Cancer Treatment Center 1901 Grandview El Paso, Texas 79902

NORTHEAST: William Beaumont Army Medical Center 5005 N. Piedras St. El Paso, Texas 79905

Rachel Schaeffer Barraza

Me and My Marrow: A Kid's Guide to Bone Marrow Transplants

by Karen Crowe This book explains what bone marrow is and what happens during a transplant.

Oliver's Story, for 'Sibs' of Kids with Cancer

by Michael Dodd This book tells a story about one child. But there is an important story to be told for every brother or sister of a child with cancer. That's because when you find out your brother or sister has cancer, all of a sudden, life can kind of get turned upside down.

Taking Cancer to School

by Kim Gosselin, Karen Schader Tom Dineen These beautifully illustrated and fun-to-read storybooks simplify and normalize complicated childhood conditions, like cancer. When read aloud, other children can identify why a peer may be treated differently and begin to empathize with them. In addition, children whose conditions set them apart as being different begin to feel accepted and safe. Each book includes a Kids' Quiz to reinforce new information and Ten Tips for Teachers to provide additional facts and ideas for teacher use. In Taking Cancer to School, Max is diagnosed with leukemia. This straightforward story may help to alleviate some of the concern that accompanies the diagnosis of childhood cancer.

What Is Cancer Anyway?: Explaining Cancer to Children of All Ages

by Karen L. Carney What IS Cancer, Anyway? Explaining Cancer to Children of All Ages is one of the books in the Barklay and Eve Children's Book Series. This book provides basic information that is essential when someone in the family has cancer and does so in a calm, clear, reassuring manner that children and adults will appreciate. Barklay and Eve, the two lovable main characters, define cancer, explain radiation and chemotherapy (including the reasons why some people lose their hair). This is a hopeful story which has a fun connect-the -dots page of the American Cancer Sociey's symbol of hope.

Fighting Chance: Journeys Through Childhood Cancer

by Harry Connolly, Tom Clancy, Curt I. Civin Containing 200 images, this book follows courageous patients, strong families, and brilliant caregivers battling cancer in and out of the hospital.

Photographed over the course of three years, it includes contributions from best-selling author Tom Clancy and Dr. Curt Civin, Director of Johns Hopkins Hospital's Pediatric Oncology Unit. Other insight comes from nurses, parents, siblings, and the children themselves. Not only is the book a learning tool, it attests to the fact that today more and more children survive their cancer.

I am 25 year old woman and an ovarian cancer survivor! I was first diagnosed with ovarian cancer (juvenile granulosa cell tumor) on July 24, 2009 after I had a left oophorectomy with the tumor removed. I was blessed that the cancerous tumor, the size of an orange, was completely encapsulated within the ovary and I required no further treatment at that time, just monthly checkups. I went two years without any signs and symptoms until one checkup when my tumor marker was elevated. An arthroscopic surgery revealed the cancer had returned but we caught it early, stage Ic. I was re-diagnosed on August 23, 2011 but elected to postpone portacath placement and chemotherapy until after my physical therapy licensure exam. I underwent 6 chemo sessions (each lasting about 7 hours) over a span of 18 weeks from October to February.

I am excited to say my hair has returned and I have been cancer free for 6 months.

1. What was your initial response to hearing the words “you have cancer?”

The first time I was told the tumor was cancerous it never really sunk in. Because I didn’t require further treatment at that time I guess it didn’t really hit me that I had cancer until I was re-diagnosed. The second time I heard “you have cancer” I thought, well this isn’t what I had planned, I mean the odds of the cancer returning were small, but I guess God had other plans in mind for me. I can remember being with my mom and oncologist when he told me and we just started praying. The next day I went into game mode and we started planning how to beat the cancer again. I would be lying if I said I wasn’t scared but I found comfort in knowing we had caught it in an early stage.

2. What has been the greatest challenge about having cancer?

I would have to say it is hearing people, especially those in the health care field, say “but you’re so young” or “you’re too young to have ovarian cancer” or even better “you look like you’re so active.” Even though the statistics heavily point to older women experiencing ovarian cancer, the truth is cancer does not discriminate against age or activity and can occur at any age. I have been active and healthy all my life, this type of cancer is not genetic, it just happens. I have taken this challenge in my life and turned it into my mission to educate others especially young women about the early warning signs of ovarian cancer. I was blessed to catch it early and I hope to provide others that same opportunity.

3. Who or what has been your inspiration during the cancer journey?

It would be hard to name just one person who was my inspiration throughout my journey because I was blessed to have so many. Looking back I get very emotional just thinking about all the people that were there for me day in and day out, bald and nauseous, weak and tired, to pick me up and give me strength.

My daily inspiration came from my faith in God, my rock and husband Andy, my parents, family, friends, coaches, coworkers, healthcare professionals, providence team, RGCF, and other cancer survivors of all ages. When I first lost my hair a group of close friends and family shaved their heads in unison and I really felt like that gave me even more strength. It’s truly inspirational to see the little kids and elderly

undergoing chemo and fighting the same fight I was; I would think to myself if they are doing it why can’t I. I also gained inspiration from my patients at the rehab hospital (I’m a PT) who were pushing themselves daily to get better and would brighten my day with a smile.

4. What have you learned about yourself since your cancer diagnosis?

That no matter what life throws at you, with faith, family and friends all things are possible. This may sound cliché but things happen for a reason. I know after we (yes me and my support system) beat the cancer the sky is the limit. I have gained even more compassion for my patients after those rough few months and am confident when I tell them things will get better. I learned that from personal experience you can help others to grow and give them strength and that is why I have chosen to share my story with so many people.

5. After cancer treatment, many survivors want to find ways to reduce the chances cancer recurrence.

As a result of your cancer experience, what lifestyle changes have you incorporated?

I have always been active and somewhat healthy but my urgency for exercise and healthier lifestyle has definitely increased since my cancer experience. I gained weight during chemotherapy, even with a decreased appetite, due to the medications and decreased exercise intensity so I really hit the gym hard once I was cleared and am happy to say I have returned to my fighting weight. The best recommendation I can make is to stay active even if it is walking at 1.0mph on the treadmill during chemotherapy because it gave me more energy. It sounds like a contradiction but exercise in moderation has been shown to improve energy and mood during chemotherapy.

6. It has been said that life after cancer is the beginning of a “new normal”…life is not like it was before cancer. What is your new normal?

I have hair now and I am excited to say when I have a bad hair day because that always beats a bald day. I am transitioning to working full time at the rehab hospital and I love that working and being a wife (not the best cook at all) has become my new normal. I

guess the biggest change is that I don’t let anything hold me back, if I want to do something I just go for it because life is too short not to live every day like that.

I am dedicating my life as a cancer survivor to helping other cancer survivors (a survivor is from the moment of diagnosis). We have developed a T.E.A.L. fund to help raise awareness for ovarian cancer by providing young women education about the early warning signs in hopes of detecting the cancer at an early stage and increasing the survival rate. Everyone knows what the color pink represents and even blue for prostate cancer, but how many people know that teal is the color of ovarian cancer and September is ovarian cancer awareness month? It is my mission to join others in the fight to help raise awareness for ovarian cancer in hope of one day finding a cure.

My new normal is living life to the fullest, with a huge smile on my face, my man and family by my side and looking forward to having kids of my own.

7. What advice can you offer someone facing a new cancer diagnosis?

The “C” word can be scary and bring about a mix of emotions from sad to angry to confused and overwhelmed but don’t be scared. A new cancer diagnosis is not an end but merely a new beginning in life to a journey that will make you stronger and help you realize just how many people love you. Take life one day at a time with a grain of salt. You will have good days and bad days but at the end of the day it is your decision if your glass is half empty or half full.

There are a lot of great support groups, websites, and literature that can be helpful especially the RGCF so don’t be afraid to reach out because knowledge is power. I suggest taking a notebook and extra person to all doctor appointments because it’s extra company for the wait (we all know how short those can be) and an extra set of ears for the information you will be provided. Ask as many questions as you want to your oncologist because they are there for you and no question is a stupid question. Lastly, allow people to care for you. It is much like being a kid again- you may need help for a lot of things but that doesn’t mean you have lost your independence. You should feel flattered that you are so loved and know that this is just temporary.

And when in doubt just remember “I can do all things through Christ who gives me strength.”

Philippians 4:13