For young people impacted by a loved one's cancer, it isn't just another day at camp - Generocity Philly

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Sep. 25, 2019 8:00 am

For young people impacted by a loved one’s cancer, it isn’t just another day at camp

In his guest column, Mark Manning introduces us to Alexandra Charlton and Sophia Smargissi, two teenagers who have built memories together at a nonprofit camp and support group where they help each other deal with loss.

Sophia Smargissi (front), and Alexandra Charlton at Camp Kesem.

(Photo by Braden Saba courtesy of Camp Kesem)

This is a guest post by Mark Manning, a regular contributor to Generocity, who is an advisory board member for Camp Kesem at University of Pennsylvania.
For two Philadelphia-area teens, Alexandra Charlton, 16, and Sophia Smargissi, 17, the support of two local nonprofits and of each other has helped them navigate the loss of their father figures.

Charlton lost her father over four years ago to lung cancer. Smargissi’s stepdad died last year due to colorectal cancer. The girls first met in 2016 on the bus ride to Camp Kesem at the University of Pennsylvania, a free camp for children impacted by a parent’s cancer. Smargissi had already attended the camp once before and recognized Charlton from Gilda’s Club, a support group organized through the Cancer Support Community of Greater Philadelphia.

“On the bus ride, I tried to talk to her the whole time. We had an instant connection,” recollected Smargissi. At camp, Smargissi takes on the camp name “Stitch” and Charlton goes by “Lil Red.”

Two and a half years after meeting, the role of mentor and mentee was reversed. Just as Smargissi was able to help Charlton navigate the ins and outs of camp life, Charlton was there to help Smargissi adapt to life after Smargissi’s stepdad died.

“I talked to her a lot when her dad [was going through] the rite of passing,” Charlton said. She knew the value of not forcing Smargissi to talk about her feelings if she didn’t want to. When Smargissi did want to talk about it, Charlton was there. When called upon, she was able to say what Smargissi needed to hear, including “let it all out, ’cause this sucks and you just can’t bottle it up.”

Both Camp Kesem and Gilda’s Club facilitate conversations about the struggles of watching a loved one face a cancer diagnosis. Camp Kesem focuses on creating connections between counselors and campers through an overnight camp and has an activity dedicated to discussing the impact of a parents’ cancer on children’s lives: the Empowerment Ceremony. Meanwhile, Gilda’s Club offers a variety of programs for children, including multi-week support group facilitated by a mental health professional, and other events such as movie nights and a day camp. Both programs are free to attend.

Smargissi and Charlton share an adviser for their separate support groups at Gilda’s Club, Shari Barkin, who has volunteered as a mental health professional at Camp Kesem at the University of Pennsylvania since 2018.

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Shari Barkin has facilitated the kid’s support group at Gilda’s Club for the past 12 years. At Camp Kesem she makes “sure all of the campers are having fun and are safe physically and emotionally.” (Photo by Braden Saba, courtesy of Camp Kesem)

The overlap between the two organizations goes beyond Smargissi, Charlton, and Barkin. Multiple children attend both programs and it was the parents of Gilda’s Club participants who encouraged Barkin — or “Auntie” as she’s known at camp — to get involved with Camp Kesem in the first place.

Barkin has facilitated the kid’s support group at Gilda’s Club for the past 12 years and helped train social work interns on how to run the 10-week program. She described her role at Camp Kesem as “making sure all of the campers are having fun and are safe physically and emotionally.” It’s more of a consultant role where counselors can come to her for advice if things come up or she can talk with campers directly. (Her role at Camp Kaseem does not include therapy.)

The two organizations have slight differences beyond programming. Gilda’s Club is open to children who have a parent, sibling, or close loved one with cancer while Camp Kesem is for children with a parent or guardian with cancer.

Camp Kesem has always been available for children whose parents are currently battling cancer, in remission, or deceased while, according to Barkin, Gilda’s Club has only recently started developing support groups for children with a deceased parent — although those children were never turned away from other events. Both organizations have locations in and around the Philadelphia area. (Cancer Support Community has seven locations in and around Philly and Camp Kesem also has chapters at Rowan and Temple.)

For Barkin, the important distinction is the similarity between the two programs. “The word Kesem means magic and I feel like there is magic in each program,” she stated.

Where does that magic come from?

“It’s just knowing that there are other kids that are sharing the same experience,” according to Barking. “The details are all different but the experience is the same. And I love that connection.”

That connection appears to be Smargissi’s and Charlton’s primary source of strength in facing their grief. Their relationship has been a source of resiliency for them both. When their schedules permit, Smargissi and Charlton can be found visiting amusement parks, trampoline gyms, or volunteering for the Gilda’s Club day camp. Once their busy school year schedules start, they enjoy FaceTiming and writing letters to stay in touch.

Their stories share so many similarities that even their favorite memories of their fathers are nearly identical.

“You said that your dad used to drive around and listen to music,” Smargissi said to Charlton. “Me and my stepdad did the same thing. My dad had a ‘69 Camaro and we used to drive around with the windows down and listen to the Beach Boys. That was one of my favorite memories, just driving around in the summer and going to car shows.”

The music was different for Smargissi but the vibe was the same. “The one song [my stepdad and I] would rock out to was Teenage Dirtbag,” she said.

Smargissi and Charlton’s story illuminates what Camp Kesem and Gilda’s Club hope to accomplish. At a young age, the cancer diagnosis of a parent ,or  a parent’s death, can be an isolating experience. By bringing children, adolescents, and teenagers together, those feelings of isolation shrink as the fun of camp, peer support, and support from camp counselors and/or mental health practitioners are available.

At Camp Kesem — whether the camper’s nickname was Power Ranger, Bagels, Jedi, G-Man, or Raven — everyone interviewed for this story spoke to the impact the week of camp had on their confidence to open up and share their feelings.

Visitors, volunteers and campers watch the talent show at Camp Kesem. (Photo by Braden Saba, courtesy of Camp Kesem)

Despite the hardships they both faced, Smargissi and Charlton appeared equally enthused for the late night dance parties as they were for the more emotional moments of camp, like the Empowerment Ceremony. Just moments after discussing how they cope with the grief of their father and stepfather’s death, they raced off to the talent show to perform a dance to Footloose with their cabinmates.

Later in the talent show, Barkin took a break from her professional duties to try to recite the first 100 digits of pi before a camper could complete a pyramidal Rubik’s cube. (The camper won.)

On the surface, it looks like just another day at camp.

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