Camp gives pediatric hematology/oncology patients safe summer fun

Nestled in the hills near Marlinton, West Virginia, the sounds of children enjoying the fun and activities of summer camp ring through the hollows. The whir of the zip line, the splashing of paddle boards in the lake and whinny of saddled horses is second only to the laughter and excitement of the children. Only this camp is different. Camp Winaca and Camp Hemovon is a combined camp for children with either a pediatric cancer diagnosis or a bleeding disorder, and is sponsored by the West Virginia University department of pediatric hematology and oncology.

“I didn't really know what to expect when I got here,” said Sebastian Bravo, a dark-haired, bright eyed, athletic young man. “I mean, I've heard about summer camp. There are summer camps all the time, but this is a camp for kids that have gone through a very challenging time in their life. The camp aspect was how I had imagined it but the bond that everyone here has, I didn't quite imagine that. We're like a family here. We all went through this together. This is our struggle. We did this.”

Bravo is in remission from Burkitt's lymphoma, a cancer of the lymphatic system that grows in immune cells. The camp gives Bravo a chance to meet others who share his cancer journey and to learn more about his fellow campers who have bleeding disorders, all while enjoying the fun of a camp experience.

“We have a variety of activities for our campers to experience,” said Anita Graham, Program Coordinator for the camps and a faculty member with the department of pediatrics, section of pediatric hematology/oncology at West Virginia University.  Camp Twin Creeks, in Minnehaha Springs, W.Va. – home to Camp Winaca and Camp Hemovon -- has a lake that offers kayaking, paddle boarding, canoeing, fishing, swimming and diving. The resort also has a climbing wall and a zip line course. In addition to arts and craft, creek walking and nightly camp fires, for many of the children who attend camp, it is their first time to try horseback riding and other adventures. “Our older campers are actually going on a tent camp out which they don't know about quite yet,” Graham said. “It's going to be a surprise.”

Every evening the older campers finish out the evening with what's called a talking stick time. A well-worn piece of tree branch is passed around the group, and gives the bearer the floor to speak freely. “It gives them an opportunity to share any thoughts about the day, anything that's going on in their lives, how camp has helped some of the things that they've experienced over time,” Graham said. “That's what camp does.”

According to Graham, Camp Winaca and Camp Hemovan offer these children something that no other aspect of their life does. Away from home and school, the friends made at camp become like a family. “There's no division between if they have a cancer diagnosis or a bleeding disorder. They actually support one another,” Graham said. “The older ones actually mentor the younger ones.” Graham gave an example in the story of a teen who had graduated from camp, reaching the maximum age for campers to attend. His last year attending, he had befriended a seven year old who was learning to self-infuse. Both of them had a bleeding disorder. The older camper allowed the younger one to stick him in the arm so that he could learn what that felt like so he could actually learn to begin to stick himself. “That was a really positive experience,” Graham said. “We see that kind of interaction between the campers all the time.”

For campers like Sebastian Bravo, they appreciate that they can talk freely about their experiences. “It's not like at school or my normal life,” Bravo said. “If someone asks me about it, I don't mind explaining to them but I don't go out and tell people because they're like, oh, you had cancer. They're surprised. Here, we all know that. It's just something we can talk freely about. I can ask someone. Oh, yeah, yeah, I had this. I was treated for this long.”

Graham explains that there is an understanding among the campers that doesn't happen anywhere else. They understand what each other is going through. They stay connected well beyond camp through social media. “They make lifelong friends here and that's part of our mission that it carries over” Graham said.

For many, camp is the first opportunity that they have had to be away from their families after being diagnosed with a life threatening or chronic illness. It allows them the possibility to learn to be more independent, more self-reliant, to experience activities that their parents might be reluctant to allow.

“It really does help because in the hospital you're that scary doctor that always sticks the needle in me and gives me that chemo that makes me sick to the stomach,” said Dr. Chibuzo O'Suoji, a pediatric hematologist-oncologist and faculty member at West Virginia University’s Charleston Division.  “Here, you're that fun doctor that is climbing the tree and zip lining and screaming, just as excited as they are.” O’Suoji says that the camp setting makes the children more relaxed and comfortable with their health care team so that by the time we go back to the clinical setting, there's more trust and more openness. “They're able to tell us things that they couldn't tell us before,” O’Suoji said.

O’Suoji is board certified and fellowship trained in pediatric hematology and oncology and is proud of the comprehensive care team’s availability to families in West Virginia. O’Suoji practices at the Children’s Cancer Center at CAMC Women and Children’s Hospital in Charleston, W.Va. whose physician services are provided by WVU Physicians of Charleston, a team that includes board-certified pediatric hematology/oncology physicians, a pediatric hematology/oncology nurse practitioner, infusion center nurse, psychologist, chaplain, child life therapist, dietitian, social worker, physical therapist and two pharmacists. As a Children's Oncology Group institution, the program enrolls patients in national cancer studies. “We have a long-term follow-up program which is expanding to include anyone treated before the age of 21 for a childhood cancer,” O’Suoji said. “This program will encompass both adult and pediatric survivors of childhood cancer.”

For O’Suoji and colleague Kacie Legg, a nurse practitioner from the WVU Physicians of Charleston who also attends the camps, the experience has given them a valuable connection to their patients that has a real impact on their relationship with them and their ability to treat them.

“It's unbelievable how much their personality changes when they are away from the medical surroundings, which they usually associate with a lot of painful procedures and lots of unpleasant things going on,” O’Suoji said. At camp, the children are free to be kids. “You see their personalities come out,” O’Suoji said. “A lot of times we have to tell them, wow, we didn't know you were this talkative or that you were this fun! They're like yeah, because in the hospital you're Dr. O’Suoji. Here I'm having fun, I'm with my friends.”

The sense of acceptance and understanding is felt among all. Jillian Minger is from New Cumberland, West Virginia, and has been to Camp Hemovon for seven years. Jillian has Von Willebrand's, which is a bleeding disorder. “It just means that when you get cut it takes longer to heal sometimes,” Minger said. “At school, since it has disease in the name people think it can spread. I have to tell them it can't spread.”

Jillian says that her favorite part of the camp is getting to have fun with the friends that she has made. It is a sentiment shared by all who attend, including Sydney Sheets from Ripley, West Virginia who also has Von Willebrand's disease. “Doing things like zip-ling is just a rush of energy,” Sheets said. “It's something you don't get very much. When you have a bleeding disorder, you're kind of kept from doing many things.”  Sheets said that it is sad when the week is over because nobody wants to leave camp because it's so great. “You also leave with a sense of acceptance and you have a family here,” she said. “It's like a second family.”

One in 330 children will be diagnosed with cancer by the time they are twenty years old. That’s 263,000 new cases each year, and blood disorders affect millions, cutting across the boundaries of age, race, sex and socioeconomic status.

According to O’Suoji, because young patients are treated as a consortium, advances are being made every single day in the diagnosis and treatment of pediatric cancer. “While we are not quite there with a cure, the outcome is so much better than it was before,” O’Suoji said. “For the kids that I saw treated a few years back compared to the kids we are treating now, the toxicities are less. The therapies are less toxic. The outcomes are better. You see an improvement in the quality of life of these kids. When I started doing this, most of the kids couldn't come to camp because they were either getting chemotherapy all the time or they had to be isolated because of the fact that they were neutropenic and were prone to infections. Their immune system was too weak.”

For Dr. O’Souji, the camp touches her on a personal level each year. O’Suoji relates the story of a young camper who returned for her second year at Camp Winaca. Dr. O’Suoji said the young lady told her that the past year at camp was hard for her because she was still undergoing treatment. “When I saw all of the other kids running around and having fun I wanted to join in, but I couldn’t because I felt bad,” she told O’Suoji. “On the other hand, I knew there was hope for me. I knew that when I was done with therapy I would be like these other kids running around and having fun.”

O’Souji said that this year, she's out running around and having fun and joining in with other campers. “Now she's the one helping another who is struggling, telling them I was exactly like you last year but this year it is so much better for me and next year is going to be better for you, so just try it,” O’Suoji said.

Camp Hemovon participant Dylan Snyder, from Hydman, Pennsylvania, aspires to be a counselor at the camp one day.  Dylan and his brother – who have hemophylia – attend the camp yearly and take full advantage of the activities.  “I literally just climbed both of these climbing walls,” he said. “Sometimes they even call me a speeding monkey in climbing because I can get up so fast. I get to be with a lot of friends that are like me or that had cancer but they kind of know how it feels. We are like one giant big family.”

“The hardest thing a parent has to hear is your child has cancer,” said Dr. O’Suoji. “You just want to grab that child, put them in a bubble, and don't let go of them.”

O’Suoji says that the beauty of Camp Winaca and Camp Hemovon is that it is the only place these kids get to be kids. She understands the worry that many parents have and the sense of protectiveness when the hospital is one painful procedure for their child after another: blood draws, needle sticks, chemotherapy. “Here it is freedom,” O’Suoji said. “Here you can play. Here you can just have fun.”

Even Camp Twin Creeks director Ian McClemmons has to remind himself that the campers in attendance share health challenges. “These campers come with a great determination, spirit, and a willingness to have fun,” McClemmons said.

“It only takes one camper to say thank you for me to be able to start the process for me to do it all over again next year,” Anita Graham said.

Plans are already underway for next summer’s Camp Winaca and Camp Hemovon.

For more information about the camps and about the pediatric hematology/oncology programs in Charleston and Morgantown, visit www.camc.org/childrenscancer or www.wvukids.com. Watch a video about the camp below: