Happy Campers : Children With Cystic Fibrosis Spend a Week Having Fun at ‘a Magic Place’ Just for Them
Every summer, Bob Crabb tells himself he’s not going back to summer camp. And every summer, he goes anyway.
For 18 years, Crabb has volunteered as a counselor at the Cystic Fibrosis Summer Camp, where children ages 6 and older stricken with the incurable disease can experience a carefree week away from hospitals and painful reminders they are different from other youngsters.
“It’s a magic place,” Crabb said. “It’s not like a normal summer camp because life is more precious. Most of these kids don’t make it past the age of 18.”
That magic keeps Crabb and other volunteers returning to camp year after year--many sacrificing their own vacations to be with the children.
“Sometimes I think, ‘I can’t do that anymore,’ ” said Crabb, a Seal Beach resident and teacher at Santiago High School in Garden Grove. “The outside world starts taking precedence. I say, ‘I can’t go. I have to paint my house.’ Then I come anyway, and I remember why I came.”
He remembers that most of the children look forward to the camp all year long. He remembers, too, that this is the one week they can be with others who share their problems. They won’t be teased because they have skinny legs and they’re not as big as healthy children. They won’t have to explain why they cough so much or take so many pills.
For one week, ending last Saturday, the children could say, “Who cares if I’m sick?” They were “normal,” thanks to the efforts of Crabb and about 30 volunteer counselors and 10 unpaid doctors, nurses and physical therapists.
Elizabeth Kaup of Anaheim, a 9-year-old with long red hair, has come to the camp for four years.
“The others understand me, and they’re strange like me,” she said.
Still, her reasons for wanting to attend are the same as any 9-year-old’s:
“You get to see your best friend and get away from your parents.”
About 80 children, most of them patients at Childrens Hospital of Orange County, traveled by bus along a narrow dirt road to Lazy W Ranch Methodist Camp, tucked away in the shrub-covered hills of Hot Springs Canyon in San Juan Capistrano.
One afternoon they assembled on the concrete tiers of a small amphitheater for the “anything goes” competition. Crabb stood before them, looking perfectly ridiculous in a blue swim cap he had pulled over his bald head. The children hooted and hollered.
Crabb had invented a game, the kind of silly activity campers love. The object: Land water balloons on a nail protruding from the top of the swim cap. Campers took turns wearing the cap and being pelted with balloons by their teammates.
The children screamed with each direct hit. Except for an occasional cough, there was no sign of the illness that dominates their lives the rest of the year. Then Crabb and camp director Bob Cook turned the balloons on the audience. Boys and girls scattered. Later, Crabb hugged a small boy who was trampled in the melee.
“The idea is to get them away from the hospital, to get them sort of dirty,” he said.
In many ways, the camp was no different from any other. The children swam, played games, made crafts and sang around campfires.
“We do have a schedule,” said Bob Flanagan, a writer and actor from Hollywood. Flanagan, 37, has cystic fibrosis and has been a counselor since he was 18.
“But it’s organized chaos. It’s just a hanger to hang our silliness on.”
Music played throughout the camp at all hours. Jimmy Buffett blared through speakers during crafts time.
Crabb, Flanagan and a few volunteers formed their own band, which jump-started campers awake in the morning. At night, they chose one girl from each cabin and serenaded her, all the while shining a flashlight in her face.
Volunteers say spontaneous activities work best. At the camp’s traditional Wednesday night dance, Flanagan once rented a tuxedo and a limo.
In the summer of 1984, when Los Angeles played host to the Olympics, the counselors decided to hold their own games. Some campers wore togas, and a boy named Todd who died this year was chosen to carry the torch into camp.
“It was a joke at first, but he took it seriously,” Crabb said. “I can still see him coming over the hill with his oxygen tank on, holding the torch.”
Moments like these keep volunteers coming back, summer after summer.
“Most feel their effort really counts,” said Dr. Ivan Harwood, professor of pediatrics and director of the cystic fibrosis center at the University of California Medical Center in San Diego.
Harwood has volunteered for the camp’s medical staff for 15 years. “The kids really look forward to these camps. It’s the one time of year when having CF is normal. . . . Yesterday, a little boy walked up to me and asked, ‘Do you have CF?’ When I told him I didn’t, he said, ‘Then what are you doing here?’ ”
Away from their parents and friends, children speak more freely about their illness and death. Said Harwood:
“Last year I stood behind two 10-year-old boys as they watched a busload of children pull into camp. I heard one of them say, ‘I wonder if so-and-so will be here?’ And the other one said, ‘No, he won’t. He was too sick last year.’ Camp is the one place they can talk about these things.”
Angela Melick of Corona, an 18-year-old with large blue eyes, finds the campers support each other.
“It’s like family,” she said. “Yesterday, I was talking with one of my friends who had a gallbladder operation. I might have to have one, too, so she told me what it was like. We can talk about our problems with each other.”
Cystic fibrosis is a hereditary disease, affecting about 1 in 1,600 people, Harwood said. It primarily attacks the digestive tract and lungs, causing severe respiratory infection.
“It’s like having permanent pneumonia,” Crabb said.
Some campers rebuild their strength by inhaling oxygen from a tank at night, and one child wore a tank at all times.
They take medication that helps their bodies digest food, and a few get nourishment through an intravenous tube.
Before each meal, a bell rang and campers filed into a makeshift medical center where the staff had filled a table with shoe boxes. Their parents had packed a week’s worth of medication into the boxes. Children picked a red or blue cup filled with their “meds.” When having cystic fibrosis is the norm, they don’t feel embarrassed about taking pills the way they do in school, the kids said.
Volunteers don’t disguise the reality of the disease, however. Some campers have had brothers and sisters who have died.
On the last night of camp, they met around the campfire for an unusual ritual. A counselor read the names of former campers who died during the year. Sometimes they toss a songbook or poem into the fire in the children’s memory. Everyone cried.
At first, the counselors questioned whether the week should end so sadly. But they and the children find the ritual uplifting.
“One of the older boys who has since died said, ‘This is the only way you know you’ll be remembered. You can’t not do it,’ ” Harwood recalled.
Yet campers also learn they have a future from adult counselors who have cystic fibrosis. At 37, Flanagan has lived longer than most. His sister died of the disease 10 years ago at the age of 21.
“I give them a sense of hope because I’ve been around so long and they see I’m living a full life,” he said.
Because of more aggressive treatment for the disease, some victims’ life expectancies have been extended to 30, although most still die in their teens.
“When we were teen-agers, there was nobody much older than us” who had CF, said volunteer Jennifer Frantom, 29, a Rancho Cucamonga resident and office manager at the Chino airport.
“And the few who were around were too sick to get around much. The attitude was, ‘You’ll die by the time you’re 25.’ ”
Frantom watched three girls sitting at a picnic table braid friendship bracelets from colored string. By her presence, she lets the girls know they can have a longer life.
“They’re always surprised to find older people with CF. It’s also good for parents to see us. It’s a big boost. We’re not dead and we’re in our 30s.”
Frantom works year-round to help raise the $20,000 in private donations to run the camp. There’s no charge to the kids.
“If I had a choice between a free trip to Hawaii or here, I’d come here,” she said.
The medical staff works with cystic fibrosis children all year, and yet they volunteer for camp because it allows them to be around the children when they’re not sick, Harwood said. Seeing them having fun “reduces burnout in professional people.”
Some of the most loyal volunteers, however, have no ties to cystic fibrosis outside camp. Cook, the camp director, works as vice president of a computer cable company.
“I have a great time,” he said simply.
Debra Schachtschneider travels here from West Germany to be a counselor. She began volunteering 17 years ago when she heard about the camp from a mutual friend of Crabb. She returned this year, even though she now has two children and is pregnant.
“They’re part of my family,” she said, watching two boys go at each other with water pistols. “Here, they can be open. They can be wild. It’s a chance for them to be themselves because a lot of them are really sheltered.”
Crabb served as the camp’s first director in 1970 after Dr. Gene Litwer, a private physician in Santa Ana, decided children with cystic fibrosis and their parents needed a vacation and helped organize the camp.
Crabb’s 21-year-old daughter, Anjie, and 17-year-old son, Kyle, accompany him to camp. Anjie, now a counselor, began coming when she was 6.
“I always wanted CF,” she said. “The kids were treated so special, and I got teased for not having it.” She quit her job as a waitress to make it this year.
“It’s an addiction,” she said. “You get so attached to everyone.”
The children count on the volunteers’ addiction.
Said Flanagan: “I have a feeling camp prolongs their life.”
Kathryn Bold is a free-lance writer.