The ‘magical’ camp for children whose parents have cancer
(CNN) — When Abigail “Abi” Yates was 10 and her father was battling a rare blood disease, her parents told her they were sending her to a special summer camp.
“I did not want to go. I didn’t know anybody. I was like, ‘Why do I have to do this?’ ” Abi said. “And, at the time, I didn’t understand the severity of my father’s illness, either. … I just knew that something was wrong and I had to go to this camp, so I didn’t know what to expect.”
Her sister Sophie, then 6, also wasn’t happy about it. “If Abi didn’t want to go, she didn’t want to go, either,” said Jennifer Yates, their mother.
Yates had seen a flyer for the camp in an oncology office in Bloomington, Indiana. It was advertising a pilot program at Indiana University called Camp Kesem, which was providing free week-long summer camps for children across the country whose parents had been diagnosed with cancer or have died from the disease. They would be fueled by volunteer college students working to give these children the best summer they could hope for.
Yates didn’t think her kids would qualify because her husband had a rare blood disease called aplastic anemia and was not diagnosed with cancer. But when she called, they welcomed her children with open arms.
“The impact of that first Camp Kesem experience was profound,” she said.
When she and her husband went to pick up the girls, they did not want to leave. “My husband and I were just sobbing, in tears … because they had had fun, and I didn’t remember, really, the last time that they were laughing like that and just really had an easy time,” Yates said.
Another surprise was the Camp Kesem policy that any camper who attends is guaranteed a spot the following year if they want to return.
“That turned it for me where I said, ‘Oh, my God, this is going to be the best week of their lives every year,’ ” Yates said.
Abi and Sophie have now been going to Camp Kesem every year since 2005, and Abi became head of the Indiana University Camp Kesem chapter during her time at the college. She has now been hired to work full-time for the camp and is the first camper to become a member of the professional team.
“Kesem definitely gave me a family that I didn’t know I really needed,” said Abi, now 22. “They were all going through something really terrible and through something so awful, we were all given this beautiful gift of a common understanding and a group of people that were really a family for life.”
An opportunity to be a kid again
Camp Kesem was founded in 2000 by Iris Ravé Wedeking, a lifelong camper who was looking to create a program that college students could really plan for and build, said Jane Saccaro, Camp Kesem’s chief executive officer.
Ravé Wedeking, now a Camp Kesem board member, originally planned a camp for children with cancer but soon realized there were a lot of similar programs.
“But there were not many for children whose parents were the ones battling the disease,” Saccaro said. “Still, to this day, 16 years later, there are virtually no support services out there for children whose parents are going through this.”
The first camp took place at Stanford University and has grown into a program with 85 college chapters across the country. Each of the camps takes place on campsites about two to three hours from the college campuses to ensure a true summer camp experience, said Saccaro.
This summer, Camp Kesem will run over 90 weeks of camp at 70 locations across the country. More than 3,000 college students will be volunteering their time and energy to provide unique, life-changing experiences for children whose parents have been touched by cancer. The students plan the camps, raise money to help finance them and then help run them during the summer, but nurses and mental health professionals are also on hand.
Marty Shamon, 24, became a college student volunteer after his freshman year at the University of Illinois. His father was first diagnosed with cancer when Shamon was 4 and ultimately died from the disease when he was 10.
When his college adviser sent around a list of clubs that were meeting on campus, Camp Kesem caught his eye. His first summer at Camp Kesem may be the most impactful experience of his life.
“Honestly, for me, it was my opportunity to be a child,” Shamon said. “Cancer, especially in a child’s life, can force you to mature and force you to look at things in a way that a child shouldn’t necessarily have to.” Even though he was 18, he finally had gotten his chance to be a kid.
But importantly, after years of being brave in the face of cancer, during that first summer as a counselor at Camp Kesem, Shamon also got the courage to open up.
“I was just crying a lot … but it was a relief,” said Shamon, now a regional program director for Camp Kesem, overseeing nine chapters in California and Arizona. “I was sharing something that I felt like I was alone in, that nobody else was going through, and in my first couple of days at Camp Kesem, I realized there were other kids that were my age, older [or] younger, going through this same thing.”
After he shared his story, another camper ran across the room and gave him the biggest hug, recalled Shamon. That camper also shared his story about losing his father at a very similar age. “Neither of us was … alone. We had someone … and really, we had 30 other people around us, was the magic that we call Camp Kesem.”
Teaching kids it’s OK to cry
Jim Higley, chief development and marketing officer for Camp Kesem, knows firsthand what children and parents in the camp community are going through. He lost his mother to cancer when he was 14 and is a cancer survivor himself and father of three. He wrote about how cancer impacted his life in a book, “Bobblehead Dad: 25 Life Lessons I Forgot I Knew.”
Higley says that one of the most important things Camp Kesem will do for children is help them build the emotional skills vital for dealing with a parent’s cancer.
“We teach the kids … it’s not only OK, it’s correct to cry, to show your feelings,” Higley said. “We’re really helping them hone their emotional intelligence, and we’re giving them the safe place to understand that the feelings that many of them have bottled up inside themselves for a long time … are not only OK feelings, they’re normal feelings.”
This helps the children go back home and to their schools and social networks, taking those skills with them and leaving them more comfortable expressing themselves instead of holding everything in, he said.
Over 3 million children have been touched by a parent’s cancer, said Higley, so the need is great. Five years ago, 1,000 children attended Camp Kesem, and this summer, more than 6,000 children will attend. “The goal is to continue to grow year after year so that more children will benefit,” Saccaro said.
It costs roughly $1,000 to support a camper start to finish year-round, so to cover over 6,000 kids this summer, the organization will have raised over $6 million, Saccaro said.
Saccaro spent her career in strategic consulting but joined Kesem five years ago to add meaning to her professional life. At that point, thankfully, most of the people in her family who had been affected by cancer were grandparents, aunts and uncles and “folks much further down along their lives,” she said.
Seven weeks after she started running the organization, that changed. Her younger sister, whom she calls her best friend, was diagnosed with stage IV colon cancer. At the time, her sister had a 3-year-old son and 10-month-old twins. She died 11 weeks after the diagnosis.
“I think in terms of this job, there’s tons of very, very painful life lessons that come at you really quickly, but what I think it has shown me … [is that] cancer cuts across all sorts of demographics and socioeconomic groups and is relentless, and so I think that was life lesson number one.”
A second life lesson, she says, comes from the student volunteers, 80% of whom have had cancer affect someone in their family. “I think I’ve learned by watching them that you have a choice. You can have these horrible things that affect you take you down a negative path, or you can take these life experiences and you can use them for good.”
The magic of Camp Kesem
A few years after Abi Yates started at Camp Kesem, her father underwent a full bone marrow transplant. He and her mother lived in Seattle during the procedure, while Abi and her sister, Sophie, stayed home with family, supported by the Camp Kesem community.
“It was a silent presence. … I don’t even think we were aware of how emotionally, mentally, physically involved they were with our children,” Jennifer Yates said.
When Abi was 16, her father died from his illness. What helped her, especially during the most difficult days, was knowing that Camp Kesem was a “safe place” that was always going to be there.
“I always was looking forward to that one week of the summer where I was able to see my family again, my Kesem family, and have that experience of magic and love that was so, so important because it made me realize that you have to stay positive in life,” she said.
“Magic” and “magical” are words every person I interviewed for this story used to describe Camp Kesem. In fact, Kesem means “magic” in Hebrew, although the camp is open to campers from all religions and ethnic backgrounds.
Part of the magic is that faced with the incomprehensible, the loss of a parent, Camp Kesem has made those affected better people, such as Abi and Shamon.
Shamon is finishing up his third year as a Camp Kesem regional program director, while Abi is beginning her first year in the same role, overseeing nine chapters in Kentucky, Ohio, West Virginia, New York and Pennsylvania. Both are committed to making Camp Kesem part of the rest of their lives.
It’s an impossible question to really answer, but I ask Abi whether she can even think about how proud her dad would be of where she is and what she’s doing now.
“I wish that I could tell him … through him being so sick, he gave me such a beautiful gift,” she said. “It’s like out of this really ugly, terrible time and thing to have happen, I was given such an amazing thing, so in a way, I am thankful because I wouldn’t be who I am, I wouldn’t have this, if it weren’t for his sickness.”
To any parents who may be considering exploring Camp Kesem — there are still slots available at select camps across the country this summer — Abi’s mother, Jennifer, has some pretty direct advice: Sign up.
“Don’t be afraid. Look it up. There’s a lot of pride in families with cancer … but it is and it has to be spoken of because of the effect on the children.”
Do you know any children whose parents have been touched by cancer? Tell them about Camp Kesem and share your thoughts with Kelly Wallace on Twitter @kellywallacetv.