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Discovering the causes of cancer and the means of prevention

Camp Fantastic, The perspective from the mountaintop

by Clara Zettelmeyer

DCEG staff at Camp Fantastic.

DCEG staff at Camp Fantastic in August 2016. From left: Diana Merino, Steve Kemgang, Leandro Colli, Stephen Chanock, Clara Zettelmeyer, Diana Withrow.

Every year at the end of August a unique collection of kids ranging in age from 7 to 17 gathers for the annual Camp Fantastic at the 4-H Recreation Center in Front Royal, VA. Special Love, Inc., a non-profit organization dedicated to enriching the lives of children with cancer and their families, runs the program. One of the unique features of Camp Fantastic is the partnership with the National Cancer Institute (NCI); the Institute supports the program with a clinical protocol. All of the children are either in treatment for cancer or within three years of completing their treatment. Many of the counselors and staff were once campers themselves.

Over its 35-year history many current and former DCEG staff have volunteered at camp. In addition to DCEG Director Stephen J. Chanock, M.D., a 22-summer veteran, this year’s crew included Diana Merino, Ph.D., Diana Withrow, Ph.D., both postdoctoral fellows in the Radiation Epidemiology Branch, Leandro Colli, M.D., postdoctoral fellow in the Laboratory of Genetic Susceptibility, Brian Muchmore, a former postbaccalaureate fellow in the Laboratory of Translational Genomics (LTG), and former summer students Steve Kemgang and me.

Dr. Chanock, trained in pediatric oncology and infectious diseases, supervises the “med” team made up of clinicians and nurses from the NCI Pediatric Oncology Branch, part of the NCI Center for Cancer Research, and other hospitals. The team works closely with Special Love to coordinate care for the nearly 100 children at camp. Dr. Chanock reflected on this summer’s experience, “It is a magical week that resets my compass and reaffirms my commitment to cancer research. I feel blessed to be in the presence of so many remarkable and noble children. I am already looking forward to next year.”  

Dr. Merino, herself a pediatric cancer survivor, reflects, “Camp is part of the healing process and I am honored to be a part of it. Here, adults don't treat kids like patients, but as normal kids. Here, kids make life-long connections and get support from friends with whom they can talk about scars, fears and the latest movie releases–all in the same sentence.” Dr. Merino is trained in cancer genomics; for her doctoral work she refined the molecular landscape of choroid plexus tumors, a set of rare but lethal pediatric brain tumors tightly associated with Li-Fraumeni Syndrome. In DCEG she is focusing on the genomics of multiple primary tumors in childhood cancer survivors and individuals with inherited cancer predisposition syndromes.

Dr. Withrow knew right away she wanted to volunteer for camp. She joined the Division in May and was signed up by July. This was not her first camp experience; she has volunteered at similar programs at home in Canada. "Camp is an exceptionally happy place full of singing, splashing, laughter and dress-up,” she said. “Seeing firsthand the consequences of childhood cancer is challenging, but knowing that you are contributing to a rare positive experience in the cancer journey for these kids is well worth it." In DCEG, Dr. Withrow’s research interests include socio-demographic and economic disparities in cancer survival and survivorship, the role of radiotherapy in second cancer risk, and the application of survival analysis techniques to these research areas.

Dr. Colli, trained in internal medicine and clinical oncology in his native Brazil, also volunteered on “med” staff. "It was a pleasure and a privilege,” he said about his time at camp. “Everyone makes everything possible, including the creation of a complex mini-hospital so the kids can just be kids.” Dr. Colli joined Dr. Chanock’s Laboratory of Genetic Susceptibility in 2013 to focus on post-GWAS and functional studies of kidney cancer. He has a special interest in translating genomics to clinical practice.

Over two summers in the LTG, Mr. Muchmore conducted functional investigations of genome-wide association study hits associated with bladder cancer under the mentorship of Ludmila Prokunina-Olsson, Ph.D. He traveled across the ocean to return to camp, all the way from Thailand where he lives and works as a research fellow at Chulalongkorn University’s Center of Excellence in Clinical Virology, Bangkok, Thailand. In reflecting on the week he said, “Those who are lucky enough to partake in camp every year are paid back 100 fold. Whether it is seeing a child who is in and out of hospice walk (dance!) for the first time in a very long time or telling scary stories at night to kids who know realities much scarier, camp is an unbelievable dose of perspective. Frankly, the world would be a much, much better place if everyone got to experience camp magic."

Mr. Kemgang spent a summer after high school working with Dr. Chanock in the Laboratory of Genetic Susceptibility. Now he is in school working towards a joint undergraduate degree in biochemistry and French. Mr. Kemgang has spent several summers at camp: “I’m always taken aback by how people from all walks of life humbly set aside their differences and come together to bring one objective to fruition: giving the campers the best week they’ve had their entire year.”

Similar to other overnight camps, Camp Fantastic offers a week away from home, with no calls or visits from parents, and no TV or smartphones. During a typical day, the kids go horseback riding, make wallets out of duct tape, or dress-up in “glamour camp.” In the evenings volunteer groups from the local community serve dinner and help set up evening activities and the nightly campfire. Monday we had a carnival, complete with motorcycles, a fire truck and the dunk tank—a camp favorite. Wednesday we all set off to Culpeper, Virginia, where volunteers help out with rides on farm equipment and water balloon fights, kids versus counselors. The involvement of the community adds to the spirit we call “camp magic.”

For me, I think it’s easy for researchers to feel disconnected from the real-life aspects of living with or surviving cancer. Camp provides a unique opportunity for staff to live and play with patients. It’s not always easy to know the campers feel about the experience. One 17-year-old, saying goodbye for the last time told us, “Because of Camp Fantastic, I finally feel normal again.”

To read more about Camp Fantastic, go to Contributions to Special Love can be made through the annual Combined Federal Campaign.