When Jon Wagner-Holtz was 11 years old, he learned that his mom had breast cancer. He felt isolated and alone; he wanted to talk about his feelings, but none of his friends understood what it was like to have a parent with cancer. And then he had a realization: There must be other kids going through the same thing. So in 1993, with the help of a $250 grant from the Susan G. Komen Foundation, the 11-year-old started a phone hotline in his bedroom for kids who had a family member with cancer. Kids Konnected was born.
Wagner-Holtz continued working the hotline alone for a full year, answering about 50 calls a week from kids all over the country. He joined forces in 1994 with licensed clinical social worker Lynnette Wilhardt to start an in-person support group for kids. Three years later, the organization acquired its own nonprofit status, and began applying for grants. Today, while the Laguna Hills, California-based organization remains small in staff, it makes a big impact by providing support and education to kids nationwide affected by cancer. Some families are referred to Kids Konnected through cancer organizations, or health care professionals, while others stumble upon it while searching for support groups online. But however they get there, kids and parents alike are always grateful: “Most people don’t get what kind of an impact cancer can have on the entire family, not just the person diagnosed,” says interim executive director Erin DeFries. “We’re a one-of-a-kind organization—there’s no other group that offers help this way just for kids.”
The support comes in a variety of forms. Most popular are Hope the Bear Care Packages, which are tailored to a child’s age and individual situation. Complete with a fluffy teddy bear, age-appropriate book and brochure about cancer, (or grief materials), as well as a handmade security blanket for kids under 5, the care packages provide a bright spot in a time rife with pain and fear. “Sometimes we’ll receive letters, hand-drawn thank- you notes, or photos,” says DeFries. “My favorite was from a mom who had cancer. We’d sent care packages to all three of her teenage sons, and she told us how much they loved their teddy bears.”
Nine states offer individual Kids Konnected support groups that are run by therapist facilitators and teen youth leaders. Unlike other support groups, there’s no set curriculum, allowing kids to come and go as they please, and group sizes vary from week to week. For many kids, the in-person support is invaluable. “Susie* started coming to Kids Konnected group meetings when she was 4 after her father died. She was very angry and didn’t understand why her dad wasn’t there anymore,” says DeFries. “Now 11, she’s become an amazing young lady who’s learned how to deal with her feelings, and when she turns 13, she’ll train to become a teen youth leader.” There’s also an annual summer camp in Big Bear, California, where kids get to connect with each other—and nature—through outdoor activities..
As funding permits, Kids Konnected hopes to expand its support groups to as many states as possible. “Everything we do for kids is free of charge, and we’re able to do it through grants and donations,” DeFries says. And the hotline that started it all? Wagner-Holtz left the organization when he started college in 1999, but children nationwide can still call the 24-hour Kids Konnected office line, which is manned exclusively by people who’ve had family member with cancer. “There’s always someone kids can talk to,” says DeFries.
See how your family can help at kidskonnected.org.
*Name has been changed.
Reprinted from KIWI Magazine