Capturing Camp Kesem – An Interview with Carrie Butler
by Gabrielle Faust
Summer camp—for most children it is the chance to get away from the everyday routine of normal family life and to engage with other children in exciting, creative activities before returning to their Fall studies. For the kids who attend Camp Kesem, the term “camp” takes on an entirely different and far more profound meaning. Traveling from home lives turned upside down by the tragedies of cancer, they have grown up far too quickly, learning to shoulder experiences that exceed their age. Camp Kesem is more than simply a summertime escape, but a chance to truly be a kid again and to be among others who understand them in a way the rest of the world cannot.
For photographer Carrie Butler, Camp Kesem has become the embodiment of hope for children whose parents are fighting for their lives. Carrie first became acquainted with the program through her brother Brett Fafard, who became a counselor while in college. In June of 2009, a year after Brett joined the camp, he was diagnosed with Stage 3 testicular cancer.
“That’s actually how I got involved,” Carrie said. “Before that time, it was just a camp that looked good on his college resume. The extent of our involvement was going to their fundraisers and I would go up for a day to shoot photos for them to use. But, after that, when he got sick and was fighting it, it became really poignant to him. It was important to him to be there for these kids because they could relate to what he was experiencing—it was something they were living with at home.”
Brett underwent surgery in addition to six rounds of chemotherapy. Throughout the process he refused to neglect his duties to the kids at Camp Kesem.
“He would always try to put on his best face for the kids at the camp. Brett loved the camp so much!” She remembered. “He would walk to camp meetings from his chemo appointments. The guy could barely stand up, but he wanted to participate. It was what he wanted to spend his time doing, even after we had exhausted all of our treatment options for him.”
In the Fall of 2010, Brett’s doctors discovered residual cancer. After an extensive battle with his health insurance company, fundraising efforts on the part of his family, and two back-to-back bone marrow transplants, Brett lost his battle a year later.
“After he passed, the camp became a way for us to stay connected with him. His wife, Laura Fafard, kind of took his spot, so to speak. She is now the co-director of the BYU chapter and has been a phenomenal asset to them.”
Compelled by her own emotional caregiver’s experience, as well as that of her two young daughters, Carrie began to perceive the impact of the program in a new light. “I have my own kids, and we were Brett’s primary caregivers. At times it was really difficult because we would have to choose between their stuff and Brett’s, although he would never have expected that of us. That definitely helps me to relate to those parents who are sending their kids off to camp.”
She continued, “With my kids, it wasn’t their parent who was sick, it was their uncle, but they still suffered. It was hard on them. It’s such a big thing for them to try to process and understand. I can feel the need. Especially after losing him. It’s an incredible gift to give these families.”
In July of 2013, Laura Fafard contacted Carrie Butler with a special photography request—she wanted to arrange a portrait session in which the children would paint statements on their arms that were a personal reflection of their experience with cancer. Having hailed from the town of Joplin, Missouri, Laura had seen first-hand the monumental impact of a similar photography done for the victims of the catastrophic tornado of 2011.
“I really thought it was just going to be another shoot with the kids. We gathered all of them for art class and said, ‘We want you to think about all of the experiences you’ve had at camp, and all of the experiences you’ve had with cancer and your parents being sick. What is the most powerful message that you want to tell the world?’” Carrie said. “All of the kids came up with the sayings you see on their arms, which is beautiful.”
At first Carrie was focused on the production of the photoshoot itself, but by the third child, she realized just how powerful and personal the statements on their arms were. “There was a girl that wrote ‘you are enough’ on her arms. She was so soulful coming up to have her photo taken. She seemed so much older than she was—12 or 13—and so much deeper than most teenagers I’ve encountered. Then there was this sweet little girl who wrote ‘strong like my daddy.’ We also had kids write ‘LIVESTRONG’ because it was an important part of their parents’ journey.”
“One of the other little girls that truly stuck with me wrote ‘Love you mom. Wish you were here.’ And my first thought was, ‘Oh, she must miss her mom because she’s at camp…?’” Carrie remembered, tearfully. “As it turned out, one of the camp counselors told me, she lost her mom about six or eight months prior to breast cancer. Camp Kesem was a place where she could come to grieve and think about her mom. So heavy for such little shoulders and she carried it so well.”
The experience has given Carrie a newfound respect for the strength of the children living with cancer at home. “We feel so much for these kids, but at the same time, I don’t think we give them enough credit. These kids have experienced things that have made them strong and empathetic and capable of these deep thoughts.”
Carrie’s experience was truly transformative, opening her eyes and her heart to see the world in a way she never thought possible. “About half way through the shoot we looked over and saw a camp counselor hugging a little girl while she was having her arms painted. At that point I realized that I had lived it, I’d seen it, but it had never really hit home like it did at that second.”
The photoshoot extended its reach throughout the camp that day, drawing in people from all quarters from the counselors to the kitchen staff. “ People were coming out of the woodwork—they wanted to share their experience and have a piece of their cancer story documented. We were all just bawling through the entire experience feeling like we were doing something so important and meaningful for these youngsters, as well as ourselves. We’ve all experienced the magic of Camp Kesem.”
The life-changing power of Camp Kesem is undeniable for those young people who may have been overlooked by traditional avenues of support. As Carrie Butler experienced through her interaction with the children she photographed, there is strength and wisdom to be found in the eyes and smiles of youth in search of the simpler joys of childhood. Though life may have asked them to shoulder responsibilities and tragedies beyond their years, for one week they can simply be a kid.
Today, Carrie Butler and her family continue to stay in touch with the world through the LIVESTRONG Foundation website to stay up to date on the best practices for eating and general wellness. “One thing that I have found so important is the instant bond that comes whenever we are out and about in our community and see someone wearing a LIVESTRONG bracelet. We make eye contact and an instant understanding is passed back and forth.”
To view the complete Camp Kesem collection of the “Let Them Be Kids” portraits by Carrie Butler please visit: https://www.facebook.com/media/set/?set=a.10151561230801338.1073741832.174629561337&type=1.