Neurofibromatosis type 1 patient attends Camp Fantastic for the first time

Dom and camp counselors

Dom (center) with his camp counselors Ethan (left) and Michael (right). 
Photo credit: Lianne Priede 

Thirteen-year-old Dom sits nervously on the platform of the ropes course, staring at his fellow campers far below. Their bodies look tiny from his perch, but their shouts of encouragement and support are loud and strong. Melanie, another camper who had navigated the course just before him, shouts, “Dom, you can do this! But if you don’t feel ready, it’s ok. We’re all here for you.” 

Dom has faced challenges before not of his own choosing. Diagnosed with neurofibromatosis type 1 (NF1) at birth, his life has been filled with doctor’s visits, hospital stays, uncomfortable treatments and tests and tumors that can be disfiguring and debilitating. 

Today he chooses to wait. “I don’t think I can do it guys; I need to come down.” He makes his way back down the long ladder and is greeted with warm smiles, high fives and hugs from those who understand in a way others cannot. They’ve been there.

The activities at Camp Fantastic do seem familiar: campfires and s'mores, swimming, horseback riding and farm visits. But this is no ordinary camp. This is Camp Fantastic, an annual week-long camp for pediatric cancer patients and survivors.  Even campers on active cancer treatment can participate through a partnership between Special Love and the NCI intramural research program, which provides 24-7 onsite medical support to the campers.  

Because of Dom’s diagnosis, he hasn’t always had the opportunity to do the things the average teenager does, but his first year at Camp Fantastic changed that. Before leaving for camp he was anxious but excited. “I’ve never been away from my family before, so I’m a little nervous about that, but I’m also excited to try new things,” he said. 

Over a week’s time, Dom did try lots of new things and some familiar ones in a setting of support, safety and friendship. He was a daily regular on the pool diving board, tried an escape room, performed card tricks for over 150 people at the highly anticipated camp talent show and danced at the safari-themed dance party. In between he forged friendships, especially with Travis, another NF1 patient. At campfire circle each night, he and others shared their fears and hopes with those who understand the best – those who are walking in their shoes. “We all just kind of got each other because we have all been through the same stuff,” Dom said.

That’s why when the end of camp arrives, many of the campers are teary-eyed while hugging each other and their camp counselors. Dave Smith, Senior Director of the camp, gathers all of the campers in the auditorium where a slideshow with photos and videos of the week is playing. A friendship circle follows, and Dave leads the campers in song and reminds them to carry a piece of camp with them every day. 

Dom says he can’t wait to return to Camp Fantastic next summer. The best part of camp? “The Teen Challenge course was my favorite. Even though I didn’t get to finish, but it gives me something to work on so that next year I can make it through.”

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To learn more about CCR's Pediatric Oncology Branch, click here.
 

 

Summary Posted: Thu, 09/12/2019