At Kesem, everyone gets a new name.
Each camper walks up to check in, amidst cheers, welcome banners, and Kesem love, they choose a name. It’s a moment of rebirth, a moment where every camper is empowered to choose their own narrative—to take on a less-burdened identity than the one they came in with. These identities are typically playful and significant to the child or counselor who chose them, be that “Eeyore” or “Cheeto” or “Abra Cadabra”. The new name ushers in an opportunity for a new experience, a little bit of Kesem magic in which cancer is not the primary focus.
Kesem was founded in 2000, by a Stanford College student as part of a service project. There are over 5 million children with a parent who has been diagnosed with cancer. Statistically, these children face increased anxiety, emotional and social isolation, and feelings of hopelessness. While they often have a variety of resources at their disposal, such as counseling, or family therapy, there existed a gap when it came to non-cancer-focused programming. Recognizing the need for a nationwide organization, Camp Kesem was born—a free, week-long camp for children ages 6-18 who have a parent with cancer. Each camper is encouraged to have fun, embraced by a community who share similar experiences, and empowered to live with confidence. That first Camp Kesem began with 37 campers and 40 camp counselors in 2000. By 2019 Kesem was serving 10,000 campers each year across more than 130 camps.
Cabin Chats and Yarn Bracelets
In many ways, Camp Kesem is a pretty typical summer camp. Students compete in group activities, eat in mess halls, share during cabin chats, and have fun. There are bonfires, talent shows, and inside jokes. One camper, Nicholas, shares that during the talent show it has become a tradition for him and his friends to “tie their shoes to dramatic music.” Much of this camp experience is intentional. Camp Kesem is an opportunity for children who have experienced deep pain to have fun and connect with other kids. Nicholas—whose mother has breast cancer—shares, “I feel like when I go to camp and then I leave, it just brings my mood up for a really long time. And I can't wait to go back again. So really it has this sort of spillover effect of just keeping me happy and in good spirits.”
There are, however, a few significant differences. All counselors are extensively trained on how to work with kids who have experienced trauma and every camp has at least one mental healthcare professional on-site. Josh Thorn, a private practice therapist and mental health professional that supports Camp Kesem, describes his role, "[I]f a counselor is struggling with a kid, they come and talk to me…and I give them ways that they can intervene. So, you're empowering all that throughout the week.”
Often Kesem will use the image of a butterfly to describe the process of growth and change that they see in campers throughout the week. A camper begins as a caterpillar, using a cocoon analogy to describe the lonely and isolating experience of having a parent with cancer. But as they continue on through the week, growing and maturing, there is a turning point, a moment in which the pain of the cocoon gives way to the celebration of the butterfly. Often that moment of metamorphosis is found in the two-hour Ceremony of Empowerment.
While it may come up organically throughout the week, Empowerment is the only time in which cancer is explicitly discussed. There is an emotional build to the week, a nervous energy as Empowerment approaches.
Personal reflection and group reflection are key pieces of Empowerment. Campers are encouraged to talk and to hear from others. Campers are also given the opportunity express stories of kindness inside and outside the Kesem community, followed by a time of celebration.
Some chapters connect everyone via string. “Everybody is connected to that same piece of yarn. And it just gives you this sense of ‘We're all in this together, we're all one,’” Josh shares. “And then we cut the yarn and tie the bracelets.” This yarn bracelet becomes emotionally significant for campers. Many share that they often tug on the bracelets when they are sad or finding themselves in need of the collective bravery of their community. Nicholas describes trying to wear his yarn bracelet each year for as long as possible, sometimes making it all the way to the next Kesem Camp.
“This is terrifying—are you okay?”
Paige, a student at Towson University, and former camper, nervously shifts in her chair, “So my school wasn't really allowed to share with me if there were any other students going through similar experiences, obviously, because of HIPAA and violations. It was hard for me to find peers who were going through the same things.” Paige continues, “After my mom passed away, I definitely went through a very hard patch. I had a lot of difficulty with my mental health and I was just having a really hard time connecting with my peers and finding ways to re-spark enjoyment in anything that I used to enjoy doing.
“And Kesem really helped rejuvenate that for me. It helped me realize that despite the loss and the grief, I can continue my life ... It really helped readjust my thinking and my mental health completely changed. And I was able to find joy in things that I used to enjoy doing. I became reengaged in theater and I kept connected with my Kesem family."
Nicholas began attending Camp Kesem when he was nine years old. Now fifteen, he describes a similar experience to that of Paige, “I guess I don't really talk about my mom's cancer with anyone outside of Kesem, because it's really hard for them to understand and the conversations never really go anywhere.” He continues, “All of the campers, even though we were all in pretty different situations, we all had a few basic things in common. It's that everyone had this sort of basic understanding and empathy. Everyone really understood each other in some way.”
Josh shares a clinician’s perspective, “What I see is it creates these attachment issues that stem from trauma. Because it's not so much a change in primary caregivers, it's that a primary caregiver's there and then suddenly they're gone. And then they're back and they might live and they might not. And so, there's all this uncertainty and a young mind does not know how to comprehend that. And so, I mean, some of them have lost their parents. Some of them, their parents are in remission, some of them, they're just fine, everything's good.”
Josh explains, “In trauma, there's three responses that people generally will have. And the worst one would be the reptilian response; we just pass out. We don't know what to do. The more mammalian part of the brain is fight or flight. And then the neocortex, the human part of the brain, is we reach out for social connection.” Josh pauses, searching for the right analogy. He continues, “So if we're on a flight and it wrecks, some people would pass out, some people would freak out and just try and get out of the plane or get in fights. The best response is if I turn to you and say, ‘Hey, this is terrifying—are you okay? Let's put a plan together to save as many people as we can.’ That human connection is the most powerful.”
Paige, voice wavering, describes the change she felt since finding Kesem, “Kesem definitely gave me the ability to articulate how I'm feeling and it really helped improve my communication skills because I felt able to advocate for myself because I felt like I had a community around me that had shared values.”
Nicholas shares that prior to attending Kesem, “I really didn't have many feelings because I just couldn't really grasp what was happening. But then after I went to Kesem, I understood more what was happening, was able to cope with it and think about it more.”
Josh says the change he sees in students entering camp compared to when they leave is palpable. He says he watches growth in “maturity, the leadership, you see even their posture, their body language changes. They become more confident in who they are. They fill a place and a purpose.” In a Kesem survey parents of campers were found to concur with Josh’s observations. Over 98% said Kesem had a positive impact on their family, and 94% say their child seems more confident in their ability to address their experience with cancer because of Kesem.
“One of the things that really attracted me about Kesem was that it wasn't just camp.”
Nicholas’ mother Karen shares her perspective as a parent with cancer, describing the care as “through and beyond.” “As Nicholas has gotten older and my treatment has changed and my diagnosis has changed and I've had a recurrence, this has been a constant something that he's always been able to be connected to, as the difference between a nine-year-old and a soon to be 15-year-old is very different and kind of where we were in 2017 versus where we are in my treatment now is very different. And to have this constant of the cabin chats and the friends and family days and the camp, obviously was amazing…So my big thing was I wanted him to know that he wasn't alone and he wasn't the only kid who was going through this and that there were people out there who understood and cared and were willing to be there for him.”
Empowering the Next Generation
One of the elements of Kesem that make it unique is that it is almost entirely staffed and run by college students. There is a small national team, but the bulk of the work of planning, fundraising, and hosting the camps fall to local ‘chapters’ or groups of college students based at a university. There are 136 Kesem chapters which will host more than 140 Camp Kesem sessions across the country, creating a large, nationally connected web of care and support that stretches across 44 states and the District of Columbia.
Alex Baldwin, Vice President of Operations—better known by her camp name, Lola—describes the financial costs of providing a free experience for the campers. “Our smaller chapters serve 20 to 30 campers. Our larger chapters are serving over 300 campers. And so, their budgets range quite widely…Some chapters are raising about $30,000 a year, some are raising about $300,000 a year. And, most of that is happening through just grassroots individual fundraising.”
Each college chapter plans and organizes a Camp Kesem for their community. Throughout the year this localized model allows each chapter the ability to provide individualized support to their campers. While there are program-wide elements, such as sending birthday cards and hosting reunions, often the greatest impact lies in a chapter’s capacity to personalize care when it’s needed.
Logan Dechter, a long time Camp Counselor through the University of Maryland chapter, describes the ongoing support, “If we find out that there's a new diagnosis, or if we find out that a parent is no longer in remission, or if we find out there's a death in the family, our first thing is, ‘When can we come and see you? And what can we do that will make you feel like we are there for you, and know that we are there for you?’ So, we've taken kids to Sky Zone, we've taken kids hiking, and really personalize that experience for them.”
At Kesem, they often talk about empowering the next generation and that’s understood to be about investing in the campers. However, a large part of that vision is empowering college students as well. Alex explains, “We do year-round training with them to really instill these life skills from fundraising, grant writing, communication, how to write a good email, how to update your resume, how to talk to people, how to care for children. I mean, you name it. We train on it. And so, if you look at our student volunteer population and what happens after school, I mean, we have doctors, teachers, veterinarians, folks who've gone to Teach for America, or the Peace Corps, or studied at Oxford, inventors in the tech industry, and so many of them credit Kesem for getting them to the next level.”
Josh Thorn sees the benefits of the Kesem experience as affecting not just the campers, but the counselors as well. “These are college students, some of them are 18-years-old,” he explains, “and they're just working hard to make this take place. And they, themselves, are turning into great leaders as they become admin throughout Camp Kesem.”
Logan is now interning as a school counselor as part of his master’s degree. This summer he is headed to Denison University to serve as the mental health professional for their chapter’s first Camp Kesem, a chapter founded by one of his former campers who is now in college. This former camper is using her experiences to provide valuable insight in her new role as a camp director. Logan gushes, a bit emotional, “Our first year, we had 36 campers, and one of those 36 campers is now a director. And she is creating that experience for other people because Kesem is just so impactful for her.”
Logan reflects on his own experience as a college camp counselor with Kesem, “If all goes well I hope to be involved with Kesem for the rest of my life. That's part of the reason I became a school counselor, because I get those summers free. I get to continue doing this thing that has absolutely changed my life. I want to be there to change other people's lives too.”
“Kesem isn’t a place, it’s a feeling”
In 2020, on what would have been their 20th-anniversary celebration, the buildup towards the annual camp Kesem jolted to a halt. As Kesem surveyed the options before them they quickly pivoted to virtual camp. This was a risk. A program like Kesem builds on the momentum of the past year, so there was no guarantee that moving the fun of camp online would work.
But the Kesem chapters persevered. Under the mantra, ‘Kesem isn't a place, it's a feeling,’ Kesem chapters worked hard to create online programming, small group conversations, and in-person activities. They sent boxes packed with supplies to campers, shared photos of leaders covered in shaving cream, and did a campus-wide outdoor scavenger hunt. Each chapter had its own spin, but kids were able to have fun and feel connected.
The pandemic has also reinvigorated a commitment to grow as an organization. “I think the pandemic, more than anything, taught us how un-equitable everything is,” Logan reflects. “The idea of summer camp is very traditionally white, upper-middle-class people who are participating.” He shares that Kesem hopes to “create more equitable opportunities for kids who wouldn't have seen themselves as represented in Kesem or in a camp environment in the past.”
For example, while a traditional camp historically includes food fights, Kesem steers clear of food waste, recognizing that “for a kid who is food insecure, or a family that's food insecure, to see this much food just being wasted and being thrown at another person, is traumatizing.”
He explains that Kesem is learning to look for what the non-dominant narratives might be, implementing them into our camps, “so that everybody, not only gets invited to the table, but once they're at the table, they feel safe and welcome there.”
“I feel like when I go to camp and then I leave, it just brings my mood up for a really long time. And I can't wait to go back again. So really it has this sort of spillover effect of just keeping me happy and in good spirits.”
However, the forced isolation of the pandemic has had significant drawbacks. Much of the magic of Kesem is found in proximity—in group singing, in hugs, and physical competition. In the things that make camp, well, camp. Alex, VP of Operations, shares that nationally all 136 chapters experienced challenges with the switch to virtual programming. She explains, “Zoom fatigue and an inability to be in person has just been really hard. And so, to not have the in-person experience over the last two years…” She sighs, “I would say more than half of our students right now are brand new.”
As life stutter-steps back toward normalcy, 136 Kesem chapters eagerly await the summer, thrilled to return to in-person camp for the first time in two years—to experience the heart-swell of camaraderie while singing around a campfire, to give a needed hug during cabin chat, and to bear witness to the metamorphosis of a camper.
Logan leans forward, his hoodie draping to obscure the Kesem logo on his tie-dye t-shirt. “There were two 13-year-old kids who had just lost their number-one support system. There was no father in the picture, and so their mom was their person, and they lost her. But their mom always told them, 'Every time you see a butterfly, I want you to think of me.'"
Logan and others from the University of Maryland chapter reached out to the twin girls after they lost their mom. They provided support, a listening ear, and organized meaningful activities.
At one point the students took the girls hiking. Logan shares that during the hike they gave the girls a gift.“We brought butterflies for them… and just reminded them that, ‘Your mom's not here with you right now, but the memories of her and everything that she's instilled in you will always be with you.’”
The two girls went on to raise over $10,000 for the Leukemia and Lymphoma Society in honor of their mother’s memory.
Logan pauses. “I think the fact that they then went forward to raise all of this money and support other people who were going through what their mom went through, I think shows the power of Kesem and also the power of the change that comes from Kesem,
“and the change for—absolutely for—the better.”