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Duke Camp Allows Kids to Live It Up

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Duke Health News 919-660-1306

KERR LAKE, N.C. -- The week Joey spent at Camp Kaleidoscope
was, quite literally, the time of his life. Free of his
parents' protective watch, it was the first and last time in
his tumultuous eight years that Joey was able to sail, shoot
archery and camp out with kids his age. Joey eventually died of
respiratory disease, but not before he had the chance to act
like a normal kid.

"Shortly after his death, Joey's father took me aside at the
hospital and thanked me for giving his son that experience,"
said Dr. Thomas Kinney, a pediatric hematologist at Duke
University Medical Center who founded Camp Kaleidoscope in
1980. "What's special about Camp K is that youngsters can --
even if only for a short time -- redefine themselves as just
kids, rather than as sick kids."

Believed to be the country's only summer camp that brings
together healthy Girl Scouts with chronically ill kids, Camp K
imparts a sense of normalcy to children whose diseases – brain
tumors, leukemia, heart disease, asthma, lupus -- have robbed
them of a carefree existence.

More importantly, parents say, it provides a window of
opportunity into the future for children whose milestones have
been measured not by little league or ballet, but by surviving
the latest medical crisis.

"We're bit by bit trying to convince them that they can go
off to college, go off to a career, and do whatever their
illness permits them to do," said Bill Taub, pediatric clinical
social worker and camp counselor. "Camp K allows them to test
their abilities and try new experiences, often for the first
time in their lives. They come away with a huge sense of
accomplishment and confidence in their own abilities."

Much of the camps' success is owed to its structure and
philosophy, said Susan Mullin, director of Camp K and
coordinator of child and adolescent life at Duke. Sick campers
follow the same routine as their healthy peers, making crafts,
learning to swim and sail, and eating their meals side by side.
Only their campsites are separate, distanced by a thatch or two
of scrub pines on this pastoral Kerr Lake setting owned by the
Pines of Carolina Girl Scout Council. Each week of camp --
three weeks during July -- a new group of 36 campers and 15
counselors settle into the rustic compound where makeshift
cabins, a mess hall and a few notable medical supplies offer
the only reminders of home.

A steady stream of celebrity visitors make rounds through
the camp each week, regaling campers with tales of daring
NASCAR escapades or the rough-and-tumble life of professional
hockey, not to mention the clowns, magicians and singers who
entertain kids and counselors alike.

Campers are joined by their doctors, nurses and social
workers who ditch their white coats and stethoscopes and
instead don shorts and swimsuits. As true counselors would,
they eat meals and sleep in makeshift cabins with the
youngsters whom they direct through the usual cadre of summer
camp activities. Meanwhile, they're always on hand to dole out
medication or respond to a medical emergency, just as they
would at the hospital.

"We wear two hats, that of caregiver and that of caretaker,"
Mullin said. "And that's the same approach we take to treating
patients at Duke – that is, a holistic approach where we focus
on the whole person, not just the disease."

In keeping with that belief, the camp was established so
that patients with varied backgrounds and illnesses could
benefit from each other's lifestyles and experiences. There is
no charge, so cost is not a determining factor in who is able
to go.

"There are many advantages to the way this camp is run,
especially the social aspect of meeting a varied group of
people," Taub said. "It's just a broadening experience."

Counselors, campers get new outlook on life

The mix of counselors is as varied as the children who
attend. The counselors include an onsite director, two
attending Duke physicians, at least two nurses, a respiratory
therapist and a physical therapist, not to mention a half-dozen
or so volunteers from Duke.

Far from just another day at work, the camp experience
profoundly affects staff members as well as campers – even for
veterans who witness death all too often, said Barbara
Frothingham, a nurse practitioner in the pediatric bone marrow
transplant team. A counselor at the camp since 1982, this
summer will make her fourth as onsite director during Week Two,
designed for 10- to 12-year-olds.

"One year, I had a youngster who was born with HIV," she
said. "His mother had died of AIDS. He got very tearful and
found me. I let him talk about his mother, and told him that if
he wanted, he could hug me and pretend I was his mother. So he
did, dried his eyes, and ran off the join the other kids."

But perhaps most noteworthy are the former patients who
return as counselors. Angie Struble, now 22 and an assistant
counselor, was a young leukemia patient whose disease was in
remission the first time she attended Camp K. The insight she
gained toward her illness brought her back for two more
summers, and eventually propelled her into a course of study to
become a recreation therapist for sick kids.

"It makes your own troubles seem smaller, not as
catastrophic, when you see the different things other children
have to deal with," Struble said. "And as you share the
activities with the Girl Scouts, it makes you think, 'I can do
this. I can do these things.'"

Returning for her sixth year as a counselor, Angie works
side by side with the woman whom she credits with instilling
her desire and motivation to pursue recreation therapy --
veteran counselor and Duke staffer Vivian Lewis.

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