Kids Konnected: Jon Wagner-Holtz

When I was nine years old, my mother was diagnosed with breast cancer. At that time we were living in a small town in Massachusetts, south of Boston. My mother's diagnosis was devastating to our family. We didn't know what it would mean in the long run. Her illness was extremely tough for me. When she came home from the hospital after surgery, I felt it was my job to be strong for her. After her first chemotherapy treatment, she was very weak and sick to her stomach all the time. I was really angry. My mom was such a good person. How could this be happening to her? But I never expressed my true feelings to her. I thought she had enough to worry about without having to worry about me.

Halfway through her treatments my dad was transferred to California; my mom, my sister, and I stayed in Boston so my mom could finish her treatments. My dad flew back and forth every two weeks for five months. It was hard on him not being with Mom and it was hard on us not having him home. My mom noticed that I was not doing well with our situation. Thinking I would feel better if I could talk to someone, she sent me to a psychologist. Actually, I felt worse. I didn't like the idea that a professional had a preconception of what a child with a parent with cancer felt like. It felt like I couldn't be my own person. I spent more and more time alone in my room. I was content playing with my Legos - they never talked back to me.

We finally made it through the treatments, and Mom started to regain her strength. She asked me to go with her to the Susan Komen Breast Cancer Foundations annual Race for the Cure. We went to the race, and Mom was up on the stage during the survivors' ceremony with about 300 other women wearing pink visors. Together they were celebrating life. I thought at the time how great it was that she had such a tremendous support group. My next thought was that many of those women probably had children, and wouldn't it be great if all of us who had parents with cancer could have such a group?

I wrote a letter to the Komen Foundation in Orange County, asking them for funding to start a hotline that kids could call and talk to other kids who knew what it was like to have a parent with cancer. They gave me $300 and 300 names of kids I could send letters to. I started the group, and I named it Komen Kids. I set up a twenty-four-hour hotline in my bedroom and started receiving calls. I probably got around a hundred phone calls, and there were eight or nine kids calling on a regular basis. We felt better knowing we were all experiencing anger, sadness, and fear. One weekend I invited the eight regular callers to come to my house, and I brainstormed with them about my ideas for a support group. We wanted it to remain kids helping kids, but we knew we would have to have a psychologist with us. Three of the other kids and I interviewed about eight psychologists, and hired one in a pizza parlor in Newport Beach. He understood that we wanted him with us for supervision, but that we wanted to run our own support group.

We decided our first meeting would be at the Disneyland Hotel in Anaheim. We wanted a place where kids could get away from the cancer environment. We knew that we couldn't have it at a hospital, because hospitals were viewed as the enemy by most of us. That's where our parents went and got sicker. At nine years old, we weren't smart enough to realize that in order for our parent to get better, he or she had to get sicker through chemicals. Thirty-two kids came to the first meeting. Kids talked about their own situations, their feelings, and the problems they were having. One girl was crying as she told us she hated going home - how she hated seeing her mom throwing up, bald, and sleeping all the time, how she hated that the cancer invaded not only her mom but their entire family's life. Another girl sitting next to her gently took her hand to comfort her. After that first meeting I felt better than I had since my mom was diagnosed. My own feelings were validated, and I knew the group meeting had helped the girl who was so upset.

Helping another kid had helped me. We sent flyers to doctors in Orange County to make sure as many kids as possible heard about our group. We were profiled in the media, and that really helped get the word out. As we grew I renamed the group Kids Konnected, and it became its own nonprofit organization. All our programs are free of charge. We're totally supported by donations. Another chapter was started in Oklahoma City six months after our first meeting in Orange County. Now, six years later, we've got eighteen chapters around the nation in twelve states, ranging form West Palm Beach Florida all the way up to Vancouver, Washington. This year, with a budget of $300,000, we will help nearly 10,000 kids.

We also have summer camps, so kids can get out of the cancer environment. This year, the seven- to thirteen-year-olds went to Catalina Island to snorkel, swim, and bike ride. The fourteen- to eighteen-year-olds went whitewater rafting for four days. The camps are free of charge to kids, and if they're coming in from out of town, we provide a home stay for them and a day at Disneyland before they go to camp. Another program is our Teddy Bear Outreach Group. We send teddy bears to newly diagnosed families. The teddy bear is a scruffy brown bear. We tie a ribbon around its neck and attach a card to the ribbon that says,

I'm just a little tattered teddy With not a lot to do

Except to be a friend to comfort Someone just like you!

If you're happy, sad, or have a tear

Just hug me, squeeze me, And hold me near.

Lots of friends you can meet, When you call on the phone

They will always remind you that You're not alone!

"Friendship, Understanding, Education, and Support for kids who have a parent with cancer."

Kids Konnected

One day, Brian, one of our charter members, came to me and told me we needed to have a grief workshop. His mother had had cancer when we first started the support group and had since passed away. He said, "There needs to be more here for kids like myself who have lost a parent to cancer." When Brian's mom died, his family put together a memorial fund for Kids Konnected and asked friends and family to donate to the fund in place of sending flowers. We used that money to start Karen's Kids, in memory of Brian's mom. Four times a year, we send kids who have lost a parent to cancer to a six-week grief workshop. They learn how to deal with their pain and anger, how to say good-bye, and how to move forward with their lives. This is the only program the kids don't run. A psychologist does most of the work for the workshop. But kids helping kids is the core of Kids Konnected. Adult volunteers supervise our program. We believe that the best way to help ourselves when we're in emotional pain is to help others.

Our youth leaders attend monthly training sessions that teach them the skills necessary to be great facilitators. Every youth leader has had a parent with cancer, so they understand what the kids are going through. At the group support meetings every month kids share their feelings, but they also learn more about the disease. A group may have a doctor come speak about chemotherapy. We also use art therapy during the support meetings. It's a comfortable way for kids to express themselves. If a group is fairly silent or hyper, an art project is great as an icebreaker.

Some kids stay in a support group a couple of months and feel they have gotten enough help. Others, whose parents are critically ill, may stay in the group until the parent passes away, and still others stay in the group for a year after their parent is gone. Some never leave. They want to help other kids the way they were helped, so they become youth leaders. In addition to our hotline we have a web site where kids can go online to get information, e-mail us, and receive newsletters and meeting notices in their area. We also have a database on books about cancer and coping skills.

My favorite program is our support groups, because that's where the kids get the most help. That's where I got the most help. I'm one of the fortunate kids. My mom is now an eight-year cancer survivor. She volunteers in the Kids Konnected office every day. When we've had a really great day - we know at least one child was helped - my mom will start to cry. She'll tell me how grateful she is to be here, alive, sharing these moments with me. I spent my high school years working hard to reach as many kids as possible. I would take classes at school in the morning and arrive at the office at 12:30 each day.

As graduation approached and I knew I would be leaving for college in the fall, I started training other students to take over running the day-to-day office duties. McDonald's gave me a $50,000 scholarship and named me the nation's top entrepreneur for creating the hotline - a hotline that more than 6,000 kids use to express their feelings and challenges. I have received other awards and scholarship s - among them a Prudential Spirit of Community award and scholarship, a React Take Action scholarship, and a National Caring Institute Award - making it possible for me to go to college at Slippery Rock University in Pennsylvania.

I'm a freshman majoring in political science and minoring in community-service learning. I will be forever grateful for the healing power of Kids Konnected. The success of the program lies in the tears of a child being wiped away by a caring friend and in the quiet "thanks" of a sick parent who can worry less about the emotional stress their illness has on their child. Kids helping kids is what we're all about. Because of our "Konnection”, a child does not have to be alone anymore.

"Friendship, Understanding, Education, and Support for kids who have a parent with cancer."

Contact: Kids Konnected, P.O. Box 603, Trabuco Canyon, California 92687. Tel: 714-380-4334 or 800-899-2866. Fax: 949-582-3989. Web site: http://www.kidskonnected.org

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