‘They Can Just Be Kids’: Summer Camps in ENC Provide Refuge For Pediatric Patients
(Reflector, Kim Grizzard) —The room grew quiet Thursday when Tamika Mackey interrupted a craft activity for pediatric hematology and oncology patients to announce that someone needed to get a few shots.
Nevah Hill stopped coloring and sat wide-eyed, worried about what might come next. The 7-year-old’s smile returned when she learned that these were camera shots, not the kind that come from a needle.
“All our sickle cell kids, they have to get blood drawn every time they come to the clinic,” said Mackey, a child life specialist serving children with cancer, hemophilia and sickle cell disease at a clinic at East Carolina University’s Brody School of Medicine.
But for five days in June, patients like Nevah had nothing to dread. Instead of appointments at the clinic, there were activities at a camp where fun and games were just what the doctor ordered. For more than 30 years, Camp Rainbow and Camp Hope have been the best medicine.
“The kids get to focus on being kids and not going to the clinic,” said Craig Harper, who has volunteered at the camps for the last decade. “They get to forget about some of their daily world.
“Some kids have never fished,” he said last week as he helped to bait hooks for campers waiting to cast a line at the camp near Ayden. Harper remembers similar firsts from camp during his childhood. He spent four summers going to Camp Hope with his sister, who had sickle cell disease.
Back then, both programs took kids to Camp Don Lee in Arapahoe, some 65 miles from ECU Health Medical Center. But in 2024, the camps moved about 50 miles closer. Today, dozens of kids and teens facing health challenges find sanctuary at a place called The Refuge.
“We switched to The Refuge because it’s closer,” said Mackey, who serves as camp director. “If a child was at camp and we needed to take them back to the hospital, versus riding an hour and a half, we’re only 20 minutes to 25 minutes up the road.”
Just 14 miles from Maynard Children’s Hospital, The Refuge seems a world away. Campers bunk in repurposed farm houses, some more than a century old, and enjoy modern-day attractions including an aqua park and a ropes challenge course. On hundreds of acres in rural Greene County, kids and teens spend their days singing and swimming, going hiking and horseback riding, practicing art and archery. But along with those rites of passage of camp comes medical monitoring provided as a protection for young patients.
“We pack a mini-hospital,” said nurse Kathy Barnhill, who has worked a week at camp for the last three summers. “I think it gives the parents a sense of peace to know there’s a doctor there, there’s a nurse there. They’re going to get their medicine. They’re safe, and at the same time, they can just be kids.”
Physicians take turns making the rounds at camp, where at least one doctor is always on duty. Like Barnhill, Mackey arrives on Sunday and stays until the last camper heads home. She has served as co-director of the camps since 2016 and took the lead this year following the retirement of Jacquelyn Sauls. A child life specialist for nearly 40 years, Sauls was instrumental in helping the camp go from a one-day outing to a local park to a weeklong experience for children.
“She (Sauls) was in the ground work of it,” Mackey said of Camp Rainbow, which opened for cancer patients in 1982. Camp Hope, for children with sickle cell disease, got its start a little more than a decade later. “Camp was her baby.”
By the early 2000s, the two camps were meeting together as one, although campers spend much of their time in groups of children who share the same medical conditions.
Those common experiences are among the welcome aspects for campers like Lawsen Ziemba of Greenville, who attended for the first time this year. Lawsen, 12, was diagnosed with leukemia in early childhood.
“People with other cancers are here, too,” he said. “It’s pretty neat that you can get the perspective from other people that have gone through the same thing you have and have a relationship with them about what you have gone through.”
Heaven Glaspie knows what many of these campers go through. Glaspie, 23, is a sickle cell patient who started out as a camper at age 8.
“Just being in each other’s presence at camp … just being able to bond with your friends that also have similar things going on as you is really one of the best things about it,” he said.
When Glaspie aged out of the program, he returned as a volunteer, serving as a counselor for other kids with sickle cell disease.
“Being able to relate to the kids and help them out, I feel like it’s a gift because not a lot of people can relate,” he said. “Also the smile on their face that they give you when they’re having the best time of their life at camp is very heart-warming.”
Volunteers like Glaspie serve alongside The Refuge camp staff members, meaning that sometimes there are nearly as many adults as campers. Staffers from The Refuge lead daily devotion times, engaging children in songs and Bible lessons.
“Our purpose is to share and model the hope of Jesus,” Executive Director Sammy Hudson said. “When we see kids that are battling really hard things, it brings to light the importance of what we do even more and it gives us greater purpose in what we do.
“These kids are really resilient. They just want to be kids,” he said. “They are full of life and that’s fun to see.”
Hudson said health care staff members and other Camp Rainbow and Camp Hope volunteers have shown a dedication that goes beyond campers’ medical needs, from dealing with discipline issues to tucking them into bed at night.
“It’s great to work with the team of people that put this together because they truly care,” he said. “They care about these kids.”
For Mackey, whose work involves helping support kids through their medical treatment, camp presents a different set of challenges, such as overcoming fears of going under water. But it requires the same kind of calm reassurance and encouragement.
“Some kids were kind of scared to do it, but they faced their fears and they did it,” Mackey said. “It was good to watch them (go from) ‘No, I’m not doing that’ to putting their head in the water.
“Some things they’ve never tried before,” she said. “They may be a little reluctant at the beginning, but the counselors work with them. Whatever challenges we come across, we help them through it.”