Hope, Healing Amid Cancer

Anger, fear and the need to grow up fast and tough forced Jon Wagner-Holtz and Richie Hiatt to mature long before their time.

At age 11, Jon found out how to deal with fear, and Richie, at 12, got tough.

Their common bond: cancer.

Jon’s mother was diagnosed with the disease, as was Richie’s younger sister. The pain caused in their families inspired them to take on challenges that would humble grown-ups.

While Jon’s mother recovered from breast cancer, Jon started a national support group for kids whose parents are stricken with the disease. From a small local group, Kids Konnected now has chapters in 12 states and serves 2,000 children on an annual budget of $200,000.

Richie, now 14, of Los Alamitos, balanced the responsibility of caring for his siblings after school with the exacting work of organizing a walkathon for young cancer patients that raised $15,000.

“I learned about all the kids out there [whose parents have cancer] and knew they needed help,” Jon said. “I’m not a super kid or anything, but I had to do something about it.”

Now 16, Jon comes home from school and heads directly for the answering machine connected to the Kids Konnected youth hotline. He listens to the young cries for help and finds a volunteer near the caller’s age to call back.

If there is a Kids Konnected meeting somewhere in the county that night, Jon gets into his 1970 Volkswagen and helps run counseling sessions. Otherwise, he deals with paperwork for the group before getting to his own homework.

“He’s put all his passion into Kids Konnected,” said his mother, Robyn Wagner-Holtz. “It comes from when I had cancer and he had a choice to sink or swim, to cry all day long or choose to say, ‘I can make things better.’ ”

Jon, a Mission Viejo High School junior, swung into action.

“What’s really hard is being 9 years old and seeing your mom in a hospital bed with IVs and you can’t hug her,” said Jon, who recalled that his mother “would be fine for an hour. Then she’d be living in the bathroom for the rest of the night because she couldn’t stop throwing up.”

Jon said he came across the idea of starting the group after accompanying his mother to a cancer fund-raiser where he realized that children needed an outlet to discuss their feelings about the disease.

Getting kids to talk about cancer is the mission of Kids Konnected.

At Kids Konnected meetings, children 4 to 17 years old are broken into age groups run by counselors or psychologists who are chosen by Jon and his teenage board of directors.

Jon regularly sits in on the sessions and becomes a youthful bridge between the kids and counselors.

At one session last month, Jon was lying on the floor, handing candy to a group of 4- and 5-year-olds, coaxing them to talk about their fears.

“I don’t think there is anything harder for a kid to deal with than losing a parent,” said Fran Baumgarten, a therapist who has worked with Kids Konnected for four years. “As a youngster, parents are your protector, your world, and losing them is devastating.”

Jon has little time to himself because of the emotional demands of leading the organization.

At 14, the stress of working for Kids Konnected began to overwhelm him.

“I was going to 20 funerals a year,” he said. “It was getting to the point where I was crying every day and couldn’t concentrate in school.”

But Jon found a business solution to help him cope.

He began to look into incorporation to better organize the group and share the emotional costs of leadership.

Last year, Kids Konnected incorporated and instantly began mushrooming as far away as New York and Florida.

For the last four years, running the group has left him with little time for recreation.

Lately, he has managed to devote more time to school activities, including joining the cheerleading squad at his high school.

His time with Kids Konnected will end soon.

Jon said he plans to resign next year when he goes to college.

“I’ll never stop volunteering, wherever I go,” he said.

For Richie, the moment of truth came when his parents told him his sister, Laci, then 6, had cancer. He said he didn’t understand how serious it was until he visited her in the hospital. (Laci has recovered.)

“He leaned against a wall, turned so no one could see him and just broke down,” said his mother, Kathi Hiatt.

“Then he wiped his tears and said, ‘Mom, I’m going to do my project,’ ” she said. “Something in me said, ‘Let him do it.’ ”

Despite his newly discovered extra duties, such as helping watch two other younger brothers and sisters when Laci was taken for chemotherapy, Richie convinced dozens of friends, teachers and fellow church members to volunteer for the walkathon.

The project ground along slowly. Richie became entangled in details such as finding a location for the walkathon and getting insurance for the event.

“It was very frustrating,” he said. But quitting was never an option.

“If I start something, I don’t want to stop it,” Richie said. “People were looking up to me to finish.”

After spending almost 500 hours organizing the 1996 walkathon, which benefited the Children’s Cancer Center at Long Beach Memorial Medical Center, Richie has gone back to being a kid. For now.

These days, Richie spends his free time in after-school sports or the Boy Scouts, where he achieved the highest rank of Eagle Scout at the unusually young age of 13.

When he enters high school next year, Richie says he will start a cancer support group on campus.

“It’ll be a place where kids get together and talk,” he said. “You need to talk about cancer.”

Last month in Washington, D.C., Jon and Richie met for the first time. They were honored as two of the top 10 young volunteers in the country.

They hung around for a weekend, touring the area.

“We bonded instantly,” Jon said. “We both hate cancer.”