Illness Doesn’t Stop Fun at Camp : Positive Attitudes Stressed for Children With Cystic Fibrosis

Todd Hanson’s summer camp days were supposed to have ended three years ago, when he was 15. The ritual wasn’t coming to a close because the Huntington Beach youngster or his parents thought he’d outgrown camp, however. Todd’s doctors believed he was going to die.

“Everybody but me is always thinking I’m going to die,” said Todd, who has cystic fibrosis (CF), a fatal degenerative disease of the lungs and digestive system that is inherited.

Last week, Todd, confounding the prognoses of everyone except himself, was back for his 14th straight season at the Cystic Fibrosis Summer Camp of Southern California. The 18-year-old Orange Coast College sophomore was one of 63 CF youngsters who attended the weeklong camp, which ended Saturday.

Todd said he “sometimes” thinks about the fact that CF victims usually don’t live beyond their mid-20s. “But I don’t let it get me down,” he added. “You’ve got to have the right attitude to fight this thing.”

The major goal of the camp, which this year was held in Angeles National Forest, is to help CF children develop positive attitudes like Todd’s by showing them they can live a week in the outdoors like normal children, camp founder Bobb Crabb told a visitor last Thursday.

Crabb, 45, is a Seal Beach high school teacher who started the program 15 years ago so Orange County CF children between 6 and 18 could participate in games, crafts, swimming, campfires and singing.

Most From Orange County

The majority of campers still come from Orange County; the camp operates under the auspices of Childrens Hospital of Orange County in Orange. However, Crabb said that youngsters also come from Los Angeles, San Diego and Santa Barbara counties--and from as far away as Las Vegas and Arizona.

The Santa Ana-based organization charges nothing for this week in the woods. It doesn’t want to impose additional costs on CF children’s families, who are often left financially strapped by medical costs, said Stephanie Frost, a nurse at Childrens Hospital and a member of the camp’s board of directors.

The camp’s 30 counselors, doctors and nurses are unpaid volunteers. Much of the food is donated by local companies. The $15,000 needed annually to rent different Southern California campsites, buy supplies and pay for transportation, Crabb said, is raised by soliciting donations from individuals, civic organizations and businesses.

“We provide an environment where CF kids can act as themselves by being around other kids who are going through the same physical and psychological things they are,” Crabb said. “Here, they don’t feel that they’re the odd person out--that they’re the only people in the world who cough a lot or need aerosol respiratory treatments.

Normally Restricted

“Normally, these kids spend a lot of time in hospitals and are restricted in their activities. Here, we let them roll around in the dirt.”

Echoing this view, camp physician Ivan Harwood said: “These kids get strong by being active outdoors like they are here. They have to be physically strong for their bodies to handle the antibiotics and other treatments to control the lung infections they’re always being hospitalized for. This is the only way to lengthen their lives.

“Almost as important is the CF kid’s approach to life; he’s got to have a positive attitude. Not only does he have to be physically strong enough to cough up lung secretions, he’s got to be emotionally strong enough to want to do it.”

Explaining how camp gives CF children this needed psychological boost, Harwood said, “Here, they lose their sense of isolation--that feeling that ‘I’m the only one in my school who has this. . . . I feel so different from everybody else.’

“Being here is like having 60 brothers and sisters because all the campers are taking pills or coughing a lot,” Harwood said. “What’s abnormal and different in the outside world is normal here.”

Because CF children are chronically ill, Harwood, 47, stays at the camp around the clock. A pulmonary pediatrician at UC San Diego Medical Center, he also serves as director of San Diego’s Cystic Fibrosis Center, one of 125 such regional centers in the nation that specialize in treating the disease.

Shortens Life

Cystic fibrosis is a progressively degenerative lung disease that shortens a person’s life, Harwood said. Because the lungs of a CF victim are defenseless to various bacteria, even aggressive use of antibiotics leaves the victim with a chronic low-grade infection. “Slowly, over a period of time, this chronic infection destroys the lungs,” Harwood said.

In addition, the pancreas of a CF victim is unable to secrete enzymes to digest food. “Without being able to digest food, you can’t gain weight,” Harwood said.

In an attempt to overcome this deficiency, children with the disease take animal enzymes and are required to eat huge amounts of food.

Nonetheless, most CF children have slight builds. “A CF kid will look like he’s 9, when he’s really 14,” Harwood said.

At 18, Todd Hanson is 5 feet, 3 inches tall and weighs only 82 pounds. “I eat constantly,” Todd said, explaining that he’s able to stay at this weight by eating five times a day.

“The casual observer can’t tell someone has CF just by looking at him. Actually, the thing that makes most people realize that there’s something wrong with someone with CF is their cough. When CF kids start coughing, they can be quite disruptive.”

Michelle Hubert, an 18-year-old CF patient, recalled in a later interview that during her senior year in high school her coughing caused so much noise in her classes that her teachers often asked her to leave and go to the principal’s office.

“When CF was first identified in the ‘40s and ‘50s--before there was any medical treatment available--most CF patients lived less than a year,” Harwood said. “The life expectancy has gone up about one year during each of the past 20 years due to earlier diagnoses and improved drugs.”

Some live longer than their 20s, though it’s rare for a CF victim to live past 40. The oldest living person with the disease is a man in his 50s, Harwood said.

Many Die Before Diagnosis

Although there are only 17,000 known cases of CF in the nation, Harwood said this understates the disease’s actual incidence. He said the number of victims is twice this because many die before a CF diagnosis is made; others have been misdiagnosed as having other ailments.

Michelle, the 18-year-old camper from Lompoc in Santa Barbara County, said her doctors did not discover she had CF until last April despite six years of worsening respiratory problems.

“Sometimes the doctors would say I’d have bronchitis, and sometimes they’d say I had pneumonia. My breathing got so bad in the ninth grade that they operated on my nose and removed polyps.”

In addition, one in 20 people in the country--10 million Americans--are carriers of the CF gene. “Since it’s a recessive gene (that can’t be screened for), people don’t realize they’re carriers until they marry someone else with the gene and give birth to a baby with the disease,” Harwood said.

Each summer, the camp has a different theme, and this year campers re-enacted the activities of prehistoric cavemen during the week. Thursday afternoon a Caveman Clan War was held.

Clans, or teams, attempted to capture a dinosaur on the opposite side of the 20-foot-long swimming pool and return it to the starting point in the fastest time.

The sequential races began with a youngster sitting astride an inflated plastic alligator that was pulled through the water by four teammates swimming alongside. On reaching the opposite side, the youngster riding the alligator grabbed a large inflated dinosaur and attempted to keep it from popping out of his slippery hands as his teammates pulled him back across the pool to the finish line.

This half-hour competition was followed by two hours of recreational swimming.

Making Friends

During this afternoon swim, Sonya Paulik, 9, climbed out of the pool after splashing about on a plastic alligator. As the fourth-grader from Anaheim happily shook her hair dry, she said, “I’m having a fun time because (this week) I’m getting to swim, learn dances and do arts and crafts.”

Sonya said she had enjoyed making friends at camp so much during her previous three summers there that after undergoing a major operation earlier this summer she had carefully followed her doctor’s orders so she could attend camp this year.

Nearby, Elizabeth Kaup, 6, paddled along the edge of the pool scooping up ladybugs in danger of drowning. The second-grader from Anaheim Hills paused momentarily during her mission of mercy and talked about how she had adjusted to CF’s medical regimen.

“It doesn’t bother me too much,” Elizabeth said. “I’ve gotten used to it.”

She said she was diagnosed as having the disease when she was 2. Since then she has taken daily dosages of decongestants, enzyme capsules and vitamins. Twice daily she inhales medication in aerosol form through a respirator to clear her lungs of mucous build-up.

‘Pounding’ Therapy

Elizabeth said she also undergoes what is technically known as “postural drainage and percussion.” More commonly it is called “pounding.”

Frost, one of the camp’s three nurses, explained that this is a process in which an adult holds a child in eight different positions and for 30 minutes lightly pounds on different areas of the lungs to loosen mucous to help the child cough it up.

“When we get together every summer, it’s like a family reunion,” Frost said in voicing a common view held by both campers and counselors. Many have attended the camp since shortly after its inception.

Debra Schachtschneider, 31, began as a counselor when she was a 17-year-old high school student. Though the Cal State Fullerton alumna has lived the past six years in Germany with her husband, she has missed camp only once in the 14 years since she began her involvement. Last year she was unable to attend because she was expecting her first child, Anna, now 11 months old.

“I don’t have CF, nor does anyone in my family, so a lot of people don’t understand why I keep coming back,” Schachtschneider said. “I do it because it’s so much fun. We’re so close that it’s like one big family.”

Bob Cook, 28, of Huntington Beach has been a counselor for 12 years and became a volunteer simply because he was a family friend of camp founder Crabb. Cook, now an executive with a cable television company, recalled that once in high school and again in college he quit summer jobs because employers refused to let him take time off to be a camp counselor.

Seven Counselors Have Disease

Many staff members have relatives who have had CF; seven of the counselors have the disease. Cindy Garver had attended camp for two years before her death in 1973 at age 17. In the 13 years since then her sister, Cathy Garver, has been a counselor.

“My sister (Cindy) is gone, but I feel that by helping with other kids with CF, I’m keeping her spirit alive,” said Garver, 32, director of a Buena Park child-care center. “Being around kids like my sister reminds me of her. She was a real fighter, and being here eases the pain of losing her.”

Said Crabb: “Many of these kids are facing death. They’re able to confront it in such a human, honest way. Being around them makes you understand how precious life is.”

Camp director Bob Flanagan, 33, is a Los Angeles writer with CF. His sister died of the disease six years ago at age 21.

“These CF kids come back year after year,” Flanagan said. “They do so because it adds to their understanding of the meaning of life--that they should live it to the fullest.

“Camp gives them a goal: to stay healthy so they can see the friends they’ve made here the next year.”

On the last night of camp, a memorial service is held for the four or five campers who have died in the intervening year. In the past, some parents have objected to this service, camp operators acknowledge.

But Audrey Conley, 21, a Santa Clara University senior with CF, said: “Kids not coming back (dying) is reality, and the other kids should know about it. A lot of kids don’t have anyone back home to talk to about dying because it’s considered a taboo subject by their parents and friends.

“It’s hard, but here we can talk about dying because of our shared experience with CF,” said Conley, who has attended camp for 12 years, the last three as a counselor. “We all think about (death). Here, at least, we can talk about it and not feel uncomfortable in doing so.”

Todd Hanson, who has participated in these services for 14 years, said: “I feel sad for the kids who don’t come back. But for every kid who doesn’t come back, there’s a new one to take his place--and make friends with.”