A Handbook for Parents
Table Of Contents
Letter to Parents, Guardians and Caregivers...................... 1 Frequently Asked Questions............................................ 2-3 Parents/Guardians/Caregivers Group.................................. 4 Tips For Helping Kids.......................................................... 5 Resources For Children.................................................... 6-7 A Special Article from The New York Times..................... 8-9
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Dear Parents, Guardians and Caregivers, We would like to welcome you to our KidsCAN! program. This special group was developed to provide children with support and information about cancer and your treatment. When their loved one is going through the cancer experience, a child may feel his or her family is the only one in the world dealing with cancer. It is helpful and important for your child to understand that he or she is not alone. There are many families going through similar experiences – dealing with hair loss, fatigue, daily radiation treatments, chemotherapy, and more. During this program, kids will • Learn about cancer • Talk with other kids who have a family member with cancer • Participate in fun activities • Be in a safe and nurturing environment • Bring parents to participate in their own special group Please take a few minutes to read through this booklet. It will give you more details about our program and contact information for our staff. All staff and volunteers are trained professionals (Social Workers, Physician Assistants, Nurse Practitioners, Nurses, etc.). Please feel free to call us at any time with your questions or concerns. Warmest regards, The Rex KidsCAN! Staff
Program leaders may be contacted at Rex Cancer Center’s main number: (919) 784-3105
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Frequently Asked Questions Who is eligible to participate? The KidsCAN! program welcomes children from 6 to 18 years old. When numbers allow, teens will meet in a separate setting. Children must be accompanied by at least one parent, guardian or caregiver. Adults meet separately for their own support.
When and where do you meet? The group usually meets the third Monday of each month (times vary during the summer) in the Rex Cancer Center on the Rex Hospital Campus from 6 until 8 p.m. A light dinner is provided from 6 to 6:30 p.m., and the program runs from 6:30 until 8 p.m.
What is a typical session like? Families are first welcomed with a family style dinner with our volunteers. A facilitator conducts a brief activity for everyone to get acquainted, and adults then go to another room for discussion. Children stay and participate in a creative activity focusing on the theme for that night. The activity is conducted in a nurturing environment that allows the children to discuss their feelings about their loved one’s illness. If numbers allow, teens will go to their designated space for their activity.
What themes are discussed? • What is Cancer? • Feelings • Changes • Help/Hope • Memories • All About Love The group will also take a tour of Rex Cancer Center.
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Frequently Asked Questions How did this program get started? The program was established at Rex in September 2002. KidsCAN! is a collaborative effort between the Holt Foundation and Rex Healthcare. The Holt Foundation was created to honor Torry and Terrence Holt’s mother, Ojetta V. Holt-Shoffner, who was diagnosed with cancer when they were children. Both Torry and Terrence played football at N.C. State University and went on to have successful careers with the NFL. The Holt Foundation is dedicated to sponsoring programs like KidsCAN! KidsCAN! is also supported by the Rex Healthcare Foundation.
What else do I need to know about the program? • All of the discussions with adults and children are confidential. The only exceptions to this rule are - An expressed threat of harm to self or others. - Suspected or reported elder or child abuse. Legally, these issues must be reported to protect those involved. The child’s well-being and safety are our primary concern. If a staff member has a concern about your child’s well-being and safety, this will be discussed with you. • At least one parent, guardian or caregiver is requested to come with their child(ren) as the program is designed to strengthen the family. If attendance is a problem, please discuss this with one of the program leaders. • A child with a grandparent or other close adult family member who has been diagnosed with cancer is also welcome to participate. In such cases, the parent and/or loved one is welcome to attend. • If death of a loved one occurs, the KidsCAN! facilitator will notify the adult group members prior to the next scheduled KidsCAN! meeting to allow parents time to discuss the death with their child. In addition, the death will be discussed at the next group.
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Parents/Guardians/Caregivers Group Parents, guardians and caregivers are a special part of the KidsCAN! program. While the children are meeting, adults will also be meeting in a nearby room. This will be your time to interact with other adults and share your concerns, questions and successful strategies for parenting. The facilitators will share with you the topic that your children are exploring. Grandparents and other adult family members close to your child are welcome to attend. Prior to the end of the group, one of the kids’ facilitators will come in and share some general information about the children’s session. The children are aware of this but also know that confidentiality will be honored and they are safe in sharing their feelings in the group. The facilitator’s visit will help you better understand what the kids are doing and help provide some ideas for talking with your child. Learning to communicate with your children about your cancer and their feelings, their fears and their questions is one of the important benefits of this program. In the adult’s group, issues may be discussed related to the children’s topic or related to other parenting issues that you feel are important. Many of the concerns and stressors that you are experiencing have the potential to impact your family and are relevant in our parenting group. You will find that others in the group share a number of similar experiences. We follow certain guidelines to make the group safer and more beneficial for everyone. These include • Confidentiality – what we talk about in our group is not shared with others • Respect for the feelings and statements of others • No sidebar conversations while others are talking • Give others the chance to talk by not monopolizing the conversation • We ask that cellphones are turned off or switched to vibrate This group is your special time, so please let us know if we can improve. The group usually begins about 6:30 p.m. and concludes about 7:50 p.m. in order to have time to hear from the kids’ group facilitator before the program session ends at 8 p.m.
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Helping Kids When a Loved One Has Cancer Tips for friends, family, co-workers and loved ones Acknowledge the fact that the child’s parent has cancer
Provide a fun distraction Family life is a bit strained; relief from that, even for a brief period of time, makes a big difference to the child’s emotional health.
The child is aware of the parent’s cancer. Acknowledging this fact allows the child to be able to talk freely about how he or she is feeling, and it shows the child that you care not only about the parent, but also about the child.
Be available to just listen
Ask the child, “How are you doing?”
Dealing with the emotional side is critical and is an integral part of what the parent and child are going through. Just be there so that they can express those feelings in an environment of love, caring and understanding.
A tremendous amount of attention is placed on the parent, so by asking how the child is doing, you give the child a sense of self-worth.
Be compassionate and understanding Whether you are the child’s teacher, coach, friend or family member, put yourself in the shoes of the child. If the homework did not get done perfectly and on time, or the child did not show up to practice, be patient and try to understand how the child is feeling.
Be available to help support the family. Don’t ask for permission, just do it! Take the kids to dinner. Give the parents some quiet time together. Grocery shop for the family. Stock the refrigerator with food for the kids. Take the kids to soccer or softball practice. The pace of life and the stress indicator just shifted into high gear. Ease some of that chaos.
Be informed Knowledge about the specific cancer and the stage the parent is in with the disease allows you to be more understanding towards the needs of the child.
Don’t make promises that you will not keep
Be realistic
Promise a child that you will be there when they need help, then be there! If promises or plans are made, follow through. Disappointments last forever in the form of resentment. Kept promises last forever in the form of love and caring.
Kids are smarter than you think. Being honest gives credibility and support to the child.
Call KidsCAN! Program leaders are available between groups for support and can be reached by contacting the Rex Cancer Center’s main number: (919) 784-3105.
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Resources for Children Who Have a Parent Diagnosed With Cancer Books
My Mommy Has Cancer by Carolyn Parkinson, Park Press, 1991.
Butterfly Kisses And Wishes On Wings by Ellen McVicker, self-published, 2006
Once Upon a Hopeful Night by Risa Sacks Yaffe, Oncology Nursing Press, Inc., 1998.
Can I Still Kiss You: Answering your children’s questions about cancer By Neil Russell, HCI, 2001
Our Family Has Cancer Too! by Christine Clifford, Pfeifer-Hamilton Publishers, 1998.
Cancer in Our Family 2013 by Sue Heiney, PhD, RN, Joan Hermann, MSW, et al., American Cancer Society.
Someone I Love Is Sick: Helping very young children cope with cancer in the family (also see Grandparents Version) by Kathleen McCue, The Gathering Place Press, 2009
How to Help Children Through a Parent’s Serious Illness by Kathleen McCue, MA, St. Martin’s Griffin, 1994.
The Hope Tree: Kids talk about breast cancer By Laura Numeroff, Wendy Schlessel Harpham and David M. McPhail, Simon & Schuster Children’s Publishing, Library Binding edition, 2001
Kids Speak Out About Breast Cancer by Laura Numeroff and Wendy Harpham, MD, Samsung Telecommunications and Sprint PCS, 1999.
The Invisible String by Patricia Karst, Devorss & Co., 2000
Life Isn’t Always a Day at the Beach: A book for all children whose lives are affected by cancer By Pam Ganz & Tobi Scofield, High Five Pub., Workbook edition, 1996
The Paper Chain by Claire Blake, Eliza Blanchard & Kathy Parkinson, Health Press, 1998.
Moms Don’t Get Sick by P. Brack, Melius Peterson Publishing, 1990.
Vanishing Cookies by Dr. Michelle Goodman, The Benjamin Family Foundation, 1990.
Mommy’s in the Hospital Again by Carolyn Parkinson, Solace Publishing, 1994.
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Resources for Children Who Have a Parent Diagnosed With Cancer Videos/DVDs
We Can Cope: Helping Parents Help Children When a Parent has Cancer by J. Bromberg, PsyD, C. McCabe, MA, & A. Patenaude, PhD. Innovative Training Systems, 2000. (Includes companion videos; see video list.)
Answers about Cancer for Kids. Rex, KidsCAN!, 2007. Kids Tell Kids What It’s Like When a Family Member Has Cancer. Cancervive, 1998.
What To Do When You’re Scared And Worried: A guide for kids By James J. Crist, Free Spirit Publishing; English Language edition, 2004
My Mom Has Breast Cancer: A Guide for Families. KIDSCOPE, 1996.
When Eric’s Mom Fought Cancer by Judith Vigna. Albert Whitman & Co., 1993.
Chicken Soup for the Soul Live! Vol. 2: “Parenting” and “Learning and Teaching” by Jack Canfield. CareerTrack Publications, 1995.
When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy Harpham, MD., HarperCollins, 1997.
We Can Cope: Helping Parents Help Children When a Parent Has Cancer hosted by Wendy Harpham, MD with NIH and NCI. Child, Teen and Parent tapes. Innocative Training Systems, 2000. (Includes companion book; see above for listing.)
Will I Get Breast Cancer? Questions and Answers for Teenage Girls by Carole Vogel. Silver Burdett Press, 1995.
Websites www.cancer.gov Search for “when your parent has cancer.” Written for teens with a parent or other family member who has cancer.
www.someoneiloveissick.com This book is a tool to assist you in talking with your 2-6 year old child about cancer.
www.cancercare.org/children Search for “helping children.” Tips for parents in beginning the conversation.
www.kidskonnected.org Friendship, understanding, education and support for kids 5-18 who have a parent with cancer.
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When mom has cancer, children need help coping by Jane E. Brody, The New York Times
“The greatest gift one can give to children is not protection from stress, change or loss, but the confidence and tools to cope with and grow with all that life offers, both the good and the bad.”
Little by little, Dr. Harpham learned. She learned how to establish priorities, to recognize and accept her limits and to get help from friends and relatives so she could devote as much of her energy as possible to her children. The lessons are thoroughly explored in her new book, “When a Parent Has Cancer: A Guide to Caring for your Children” (HarperCollins, $24). This is the third major book Dr. Harpham has written since her disease forced her to relinquish her medical practice. The others, “Diagnosis Cancer: Your Guide Through the First Few Months” (W.W. Norton paperback, $10.95) and “After Cancer: A Guide to your New Life” (Harper Perennial paperback, $13) also grew out of her personal experiences and intense desire to help people facing cancer get the very most out of their lives.
That is the lesson Dr. Wendy Schessel Harpham says she has learned from the six years of being a mother with cancer. Although it may be hard to imagine, Dr. Harpham is convinced that her three young children are emotionally healthier and “better able to cope with the world – with disappointment, loss, challenge and sadness – than if I had never been sick.” Cancer, she said, has been “a strengthening force for my family.” For half her children’s lives or more, Dr. Harpham has been battling a low-grade form of non-Hodgkin’s lymphoma, a disease that has repeatedly receded and recurred and is currently in remission. When her cancer was diagnosed in 1990, Dr. Harpham, a medical doctor who was 36 at the time, and her husband, Ted, a professor, had three young children: William, who was 22 months old; Jessica, approaching 4; and Becky, nearly 6.
The new book began as a several-page sequel to “Becky and the Worry Cup,” a story she wrote to be read to children trying to cope with a parent who is seriously ill. But Dr. Harpham soon found that she has much more to say to parents than could fit into a brief addendum. So the “Becky” book became an insert on the cover of the main book.
As with most families struck by cancer, the Harphams of Dallas has no road maps on how to integrate the stresses of a potentially fatal disease, the debilitating effects of repeated rounds of intensive chemotherapy and radiation, the challenges of a demanding career and the needs and concerns of three young children who wanted their mother to be at their special events, to take them to the park and to be there whenever they needed her.
Later, Dr. Harpham discovered a related work, “How to Help Children Through a Parent’s Serious Illness,” by Kathleen McCue, a child-life specialist at the Cleveland Clinic, with Ron Bonn (now a trade paperback by St. Martin’s Press, $10.95). Dr. Harpham said she had been struck by the congruence of their messages. As Ms. McCue put it: “You must tell your children the truth. Your children are affected by everything that happens in the family. The more serious the situation, the more they will be impacted. Lying to your children, in any way, will inevitably make things worse.” Even when the parent’s goal is to protect the children, dishonesty is the single biggest mistake the parent can make, Ms. McCue maintains.
“When you’re diagnosed with cancer, or with any serious disease, you’re very needy – emotionally, spiritually and physically,” Dr. Harpham said. “How can you raise your kids if you as a parent have so many needs?”
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On the day Dr. Harpham’s cancer was diagnosed, her husband Ted told their children the news in terms they might understand: that their mother was very sick with a disease called cancer, that she would have to be in the hospital for a while and that doctors would be giving her powerful medicines to make her better.
choice about going to the movies. Your choice is whether you sulk or find something fun to do at home.” The process, Dr. Harpham emphasizes, is continuing. As children mature and reach new levels of understanding, their concerns about their ill parent and their own future must be addressed over and over again in increasingly sophisticated ways. That is especially so if the illness is one that does not go away for good.
Unless children are told the truth and given an understanding on their level of what is happening, they will become distrustful, awash in a sea of uncertainty and fears, Dr. Harpham insists. They do not have to be told every gory detail, but they need enough to understand the unavoidable changes in their lives.
“Since I didn’t get well, and I didn’t die, my family was stuck with dealing with cancer,” she wrote. “I had to continue to learn about what was happening with my kids and find new and better ways to help them.”
Children must also be reassured that they will always be cared for, no matter what happens to their ill parent. They need to know mundane things like whether there will be someone to drive the car pool, watch their ballet performance, fix their lunch or read them bedtime stories. The less a child’s routine is disrupted, the better.
From Ms. McCue’s extensive experience in counseling families with a serious ill parent, she has zeroed in on five “early warning signs” that a child is not dealing well with the situation and needs help. They are asleep disturbances, like repeated awakenings during the night, bad dreams and sleepwalking; eating disturbances, like eating constantly, overeating or eating very little; fears of almost anything, like doctors, letter carriers, a baby sitter or being in the room with a sick parent; developmental difficulties, like forgetting toilet training, dropping out of activities, getting poor grades, trying to avoid school, picking fights with other children; and developing pains that have no physical cause and acting out or becoming unduly quiet.
Children also need to be prepared for the physical changes that will happen to that parent – scars, hair loss, fatigue, and the like – and should be reassure that despite them, it is the same mom or dad inside. However, Dr. Harpham said it was a good idea to shield children from avoidable daily reminders of the parent’s illness, like walking around with a bald head or exposed bruises. Too often, ill parents make the mistake of feeling guilty and apologetic about being unable to fulfill all their children’s needs. “I learned that my kids did better when I was firm about the unavoidable changes they didn’t like,” Dr. Harpham wrote. She told them: “I know you don’t like it, but there is no
“If your son or daughter responds to the family crisis by going silent – by ‘going away’ – you should go after him or her, Ms. McCue wrote.
“From The New York Times, February 12, 1997 ©1997 The New York Times. All rights reserved. Used by permission and protected by the Copyright Laws of the United States. The printing, copying, redistribution, or retransmission of this Content without express written permission is prohibited.”
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