Two camps bring kids with chronic illness from the clinic to the woods and water.
By Rachel Herzog
When you walk down the dirt road through the woods and fields that surround the town of Arapahoe during the week of Camp Hope and Camp Rainbow, there’s nothing that would distinguish the site from what you’d picture in movies and beloved childhood memories.
A cluster of kids in oversize T-shirts huddles in the shade of the tall pine trees between rounds of freeze tag; others splash into the green pool from a wooden platform as a golf cart zips by. You can see a rainbow of sailboats on the jewel-blue water of the Neuse River, just beyond the basketball courts. Near the shore, a group of kids in life jackets prepares to set sail.
You wouldn’t guess that 6-year-old Jalexia Moore, smiling and strapped into a faded red life jacket, spent her first few years of life in and out of the hospital.
Jalexia has sickle cell disease, a genetic blood disorder that causes sudden or chronic pain and affects about 500 people in eastern North Carolina.
“She’s had a really rough go,” camp volunteer Dana Sparks said.
But by the end of this week, thanks to Camp Hope, she’ll be sailing all on her own.
Camp Hope was developed by the pediatric hematology and oncology staff at East Carolina University’s Brody School of Medicine to help children with sickle cell disease learn more about their illness and themselves. It began in 1982 as a weekend event at a Greenville park, then expanded into a weeklong getaway at Don Lee Camp and Retreat Center in 1984.
Camp Rainbow, which is geared toward children with hemophilia and cancer, started in 1991, taking place at Camp Don Lee the same week as Camp Hope.
“I can’t imagine doing anything else in the summer. It’s my favorite week of the year,” camp director Jacque Sauls said. “It’s tough, it’s tiring, but it really is a wonderful experience.”
This is Sauls’ 29th year at camp. As a child life specialist at the Vidant Medical Center, ECU’s teaching hospital, she works to help children with chronic illness understand what’s going on and prepare them for and support them through their procedures. But she’s found that nothing helps the kids cope with their illness more than learning from their peers.
“We saw how beneficial it was for children with chronic illness to get a chance to meet each other, to learn from the older patients,” Sauls said. “To the younger patients, there’s just no better education model, I think, than someone who’s been there.”
The camp is free to patients, and the $900-per-camper cost is covered by donations from community groups and grassroots fundraising.
In the 1990s and early 2000s, the program could bring more than 200 patients to camp. Since the mid-2000s, fundraising has been more difficult. This year, there are only 59 campers, all of whom receive treatment at Vidant Medical Center.
They’re still a diverse and spirited group, Sauls said.
“You have some kids come with a shopping bag, like, these are the supplies they came with, and other kids will come with 14 suitcases,” she said. “The most special thing is that they all know they’re exceptional in some way that other campers are too.”
Camp volunteer Dana Sparks, who also volunteers at Vidant Medical Center, talks about watching chronic illness patients become fearless campers. This is her fifth year at camp.
The camp experience
“Parents don’t often let their children with chronic illness go to sleepovers or stay at camp for a week, so this is a big experience,” Sauls said.
To make the experience possible, the program brings the clinic to the camp. Nurses and doctors stay the week, and there are additional counselors for each group to do extra monitoring. Kids with these diseases have weakened immune systems or are sensitive to changes in temperature, or may wake up in pain in the middle of the night, so it’s essential to have a low camper-to-staff ratio and medical support on site.
“They can come with us because they know, ‘My doctor is right here,’” Sauls said. “We know them, we know what medicines they’re on.”
Each night, the golf cart turns into the medicine cart, parked outside the campus store and filled with tackle boxes containing each camper’s pills, which they receive when they visit for an evening snack.
“We don’t want to bring them away from their activities to the health center if we don’t have to, so we try to bring the regular health care to them,” Sauls said. “We also want the new campers to see that, ‘Hey, everybody in my group takes that same pill.’”
Many of the younger kids learn to take pills or insert their own IVs for the first time at camp. This, Sauls said, is part of a push in the health care model to empower young adults with chronic illness to take control of their lives and conditions, since they won’t always be with their parents or their doctor who has followed them from birth.
Campers also learn how to keep their own records of their pills and dosages.
“I think it’s a coming trend we’re seeing in pediatrics,” Sauls said.
A new level of support
Camper Tre McAllister was diagnosed with non-Hodgkin’s lymphoma when he was 12. When Sauls and his nurses first encouraged him to attend Camp Rainbow, he wasn’t sure it was for him.
“I was still kinda down,” he said. He had just spent eight months out of school due to his weakened immune system. “I was like, ‘I don’t wanna be around other people like that,’ and they were like, ‘Yeah, you need to go.’”
So he caved. And despite not knowing any of the other campers, he fit in.
“The first day, we were kind of like friends, and by the end of the week we were like family,” he said.
Now 17, Tre is in remission. He’s come back to camp every year since and plans to eventually return as a counselor. He believes the chance to help younger kids by sharing his experience will prepare him for a career as a pediatric oncology nurse practitioner.
“You do think you’re not gonna live sometimes, just things like that – because cancer is a big word, it scares you a little bit,” he said. “And I could be like, ‘Hey, I was in your same position, look where I’m at,’ and give them some type of hope.”