For children with cancer, Special Days Camp helps them feel comfortable and ‘normal’ while they also have a good time
When Toni Hinkle’s son Joey was 4, a dog nipped his hand. The next day, swelling of his hand prompted Toni and her husband to take Joey to the doctor. By then, the swelling had spread to his arm, so the doctor referred him to Oakwood Hospital.
There, routine emergency-room blood work revealed news no parent ever wants to hear: Joey had leukemia. In fact, his blood was so full of leukemia cells, the doctors told the Hinkles that, had they not caught it when they did, the disease would have worked its way to his brain within two weeks.
“I was just heartbroken,” Toni says. “I didn’t know what I was going to do; I didn’t even know what leukemia was.”
Joey started chemotherapy the very next day. Not long after, the staff at Children’s Hospital of Michigan, where Joey was being treated, encouraged the Hinkles to check out Special Days Camp, a weeklong summer camp for children with cancer that’s held at a YMCA campground near Jackson. Special Days, founded in 1979 by George Royer, a pediatric oncologist and his wife, Carole, now is the world’s second-oldest camp for young cancer patients.
“I was kind of scared because he was going to be away for a week and he was only 5 years old,” Toni says. “He was still on chemo at the camp. But the medical staff gave him his medications and injections right there on site.”
Joey returned to the camp year after year, even after his cancer went into remission when he was 6. Now 17, Joey plans to enter training to be a Special Days counselor.
“He met a lot of friends there,” Toni says. “And the exposure to kids with cancer helped him growing up. He went through the hair loss and everything, and it was just him by himself. Going to the camp and seeing the other kids with different kinds of cancer and the same kinds of things he’s going through made him feel more comfortable.”
It’s that kind of comfort and sense of normality for children with difficult health issues that’s behind a number of health-related camps around the state. Michigan is home to camps for youngsters with cancer, diabetes, special needs, and ventilators, for example. Ironically, by bringing kids together who share a common health problem, the kids can take a break from being identified by their illness and feel normal.
“We specialize in letting kids be kids, in a medically safe way,” says James Carrey, Special Days’ executive director. “You wouldn’t know the kids are sick when they’re at camp. They ride horses, swim, do arts and crafts. They have people like themselves they can talk to. It’s a respite for everybody.”
Lynne Royer-Willoughby, daughter of the camp’s founders and now a nurse practitioner and Special Days’ health center director, says the camp is “all about creating a safe camping experience for normal kids who just happen to get cancer. They might require special observation, and our goal is not to change their therapy.”
In fact, a small army of doctors and nurses volunteer at Special Days and ensures the kids have access to top-notch medical care throughout their visit. The 70 or so staffers also include cabin leaders of all ages, chosen for their love of working with kids. The volunteer corps is so devoted, says camp director Tammy Willis, that 90 percent are retained each year. Many are also on staff at the camp’s referring hospitals, so children get to see their regular doctors.
Such a high level of medical care eases the minds of parents, many of whom, like Toni Hinkle, are reluctant to let a sick child out of their sight. Parents are discouraged from calling children during the week, but are welcome to check in with staff 24 hours a day. Every night, the staff spends hours uploading photos from the day’s activities to the camp’s Web site so parents can see images of them having fun.
Two dozen years ago, Special Days added a second week of camp for the siblings of kids with cancer. And during winter months, a weekend camp brings all the kids together.
“As long as I’ve worked with both camps, the sibling program probably serves a greater purpose,” Royer-Willoughby says. “The kids with cancer always get attention. People always bring them gifts. Siblings go through a tremendous experience. It’s not uncommon for them to even wish ill will to their siblings because they just want their parents back. But then they feel guilty.
“They just need a place where other people will say, ‘Yeah, I’ve felt that way, too.’ ”
It’s a sad fact that, once in a while, a Special Days child loses his or her fight against cancer. “Circumstances with kids can change,” Willis says. “They can be in remission, then come out of remission. We had a kid who was terminal when he came — he had three weeks [to live] and came and spent a week with us. For parents to know that that’s coming and then allow him to come … I really admire the parents who are able to share their kid with us.”
Though therapy is not part of the camp’s services, each session concludes with a ceremony in which campers place a candle on a small boat and set it afloat. The child is then encouraged to reflect on his or her experiences and remember those who aren’t with them.
Royer-Willoughby says little has changed at the camp since Special Days was founded — with one notable exception: The children are faring much better. “More and more of our campers do better with every passing year,” she says.
“I don’t ever have to tell a parent their kid might die, but I do have to tell them their kid is going to live,” she says.
Michigan offers a number of summer camps for children:
Click here for complete list of camps including special needs, sleep away, and others.