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1997 Patient/Provider ConferenceEthical, Legal, and Social Issues
AbstractsSunday, May 3, 1997, Bethesda, Maryland
Children and VHL - How Children and family members cope with VHL
From a talk presented at the VHLFA Patient/Provider Conference, May 1997, Bethesda, Maryland When I was 10 years old, my Mom sat me down on our couch and told me they found a lump in her breast. At that time I thought "a lump in her breast -- no big deal." She didn't know if it was going to be cancer, so she didn't mention the word at that time. After her first surgery, when she told me it was cancer, I got scared. I thought cancer automatically meant death because that was all the media focused on. One of the biggest fears kids have is that their parent is going to die, and that was mine, too. One of the other big issues I'm still struggling with is that I feel that I have a very good chance of getting breast cancer myself, since my mother and grandmother both had breast cancer, plus we have lost other family members to other types of cancer.
Many times I wished it was me going through the pain and surgeries (five in all) rather than my Mom. When kids find out that their Mom or Dad has cancer, they have a lot of questions, fears, concerns and feelings and need to talk about them. At the time, a support group helped my Mom cope but there were no groups for the kids.
Four years ago that changed when Komen Kids' (KK) founding President Jon Wagner-Holtz, 11 at the time, came up with the idea to start a hotline and friendship network for kids who had a parent with cancer because of the difficult time he had dealing with his Mom's breast cancer. He wished there was a group of kids to talk to who knew what he was going through. After Jon's request for funding from the Orange County (OC) chapter of the Susan G. Komen Breast Cancer Foundation was approved, he sent letters to children of chapter members asking if they wanted to help start a telephone hotline and friendship network for kids who had a parent with cancer. I received one of those letters since my Mom was treasurer. I was 12 and although my Mom was finished with her treatment, it was definitely something that I wanted to do to help others. I was one of the lucky ones to still have my Mom here because of early detection.
Jon called our first KK planning meeting and I and three other kids showed up and brainstormed. We shared ideas about what we wanted the program to entail. We decided the group would be open to kids who had a parent with any type of cancer. We wanted monthly meetings (not in a hospital) and came up with topics to talk about. Meetings start by Jon, I and other youth leaders welcoming everyone, sharing any KK news and our favorite part is kicking the parents out. Yes - no parents allowed. We bring in occasional guest speakers to talk about chemotherapy, coping skills or to help us express our emotions through art therapy, etc. I found the more information I had, the less scared I was.
Each meeting includes a confidential "rap" session where kids are split into groups by age level to talk about what they are going through. Jon and I, along with our Moms, interviewed Ph.D. child psychologists and licensed clinical social workers who facilitate the meetings. The meetings offer a safe environment to share feelings with others who know what they are going through and to talk about worries and issues that they have to deal with.
The kids give and receive support, validation of their feelings, and advice from others who have been where they are. Many kids don't share their feelings outside these meetings because friends or classmates make fun of them or their ill parent or they may be afraid they'll "catch" cancer from the child. This is because many children lack knowledge about cancer. Some kids don't share all their feelings with their own parents as they don't want to cause added stress to an already stressful situation. But they learn to express their feelings, to improve communication with their family, friends, and healthcare professionals and learn new coping skills. Most kids want to be told the truth and not just be told "everything is going to be okay." Through KK, the kids learn that they are not alone. We also wanted to get together for socials, where we could try to forget all about cancer for a short time and just have fun.
A 24 hour, 7 day hotline was installed in Jon's home. We and other kids went through training on how to handle calls. On the phone or in the meetings, Jon, I and the other youth leaders don't give out medical advice but are there to listen and give support. Our OC charter chapter was the first and our program also includes meetings in three locations, a national newsletter, resource list of books, summer camps, youth leadership, Teddy Bear Outreach, and Karen's Kids, a 5 week grief workshop for kids who have lost a parent to cancer.
KK is a program providing friendship, understanding, education and support for kids who have a parent with cancer. It was developed for kids by kids to meet the needs of the kids. As Charter Vice President of KK and my Mom as adult co-advisor for the past four years, we have been involved from the onset to offer support and help others cope with one of the most difficult things they may have to face in their lifetime. We have seen how KK provides something that these kids could not find anywhere else at a time when they most needed help and emotional support and how much this program has done to help so many kids (and families, too). This has become a national program with different locations implementing some of the same activities as the charter program in OC, California. Under the leadership of Jon and his Mom, Robyn, the program is expanding even further and going through a transition, including a name change to Kids Konnected.
To find out more about a group in your area or if you would like to set up one in your area or have any questions for Jon or his Mom, Robyn, call them at 714-380-4334 or write to P.O. Box 603, Trabuco Canyon, CA 92678. For any questions for Kelly or Jane, call (714) 546-2339 or write to 3941 South "E" Bristol, Suite 337, Santa Ana, CA 92704. I wish that no other kids ever have to hear the same words that I heard about my Mom having cancer, but if they do, I am glad that KK is here to help them through it.
Bibliography for Books helping childen to deal with parent's cancer For parents:
How to help children through a parent's serious illness, by Kathleen McCue. Excellent book with very practical advice and suggestions for parents.
Helping Children Understand: a Guide for a Parent with Cancer. This book outlines steps you can take to help your children understand what's happening to you and help you through the difficult time in your family's life.
For Teenagers and Older Children:
Moms don't get sick, by Pat and Ben Brack. Written by a mother and son describing their experiences and feelings while the mother was treated for breast cancer. Good for moms too. When someone in your family has cancer, Helps children understand more about cancer and how it's treated. It also discusses the changes that occur and how to deal with feelings about what is happening.
It helps to have friends when Mom or Dad has cancer. Story about how a support group helps children deal with parent's cancer and common emotions experienced.
Cancer, the whispered word, by Judy Harris Swenson. Presents information about cancer, emphasizing those things of particular interest to children and describing how the disease affects family members.
Coping when a parent has cancer, by Linda Strauss. Suggests how to deal with physician and psychological problems when a parent has cancer. Understanding Cancer, by Susan Terkel. And introduction to cancer, types, and treatment and the common emotions associated with cancer.
For younger children: When Eric's Mom fought Cancer, by Judith Vigna. Story about a mother who undergoes treatment for breast cancer.
My Mommy has Cancer, by Carol Stearns Parkinson. Story about mother with cancer and children's common misconceptions. Very good simple explanation of cancer for very young children.
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