When Al Visconti was diagnosed with synovial sarcoma in 2004, his son was only 4 weeks old.
Intense chemotherapy followed, as well as debates about whether the affected leg would need to be amputated. Surgery saved the leg, but the chemo continued. For nine months, Vicsonti would come home from the doctor connected to a pump that delivered drugs for five days straight. He endured this every three weeks for the entire nine months.
“Then he was clean — clean for almost five years,” says Al’s wife Amy. “In that time we had our second child. But when our kids were 5 and 2, the cancer came back in his lung.”
The cycle began again: The tumor in Al’s lung was removed. More chemo. Three years clean and the cancer came back in the same lung. By that time the Visconti children were 8 and 5. They watched their father undergo another surgery to remove the tumor in his lung, but just six months later it was back — and this time it was inoperable.
And this is where the family is now. Amy says Al has been undergoing chemotherapy relentlessly for the past two years. Al’s chemotherapy regimen was so intense he couldn’t work, and now he’s on disability. Their children, now 7 and 10, have never known a life that wasn’t controlled by cancer.
“Our kids are around it all the time, and he has a very intense chemotherapy, so there’s no way of hiding that he’s ill,” Amy says. “They see him sick and weak — his body has changed a lot. We don’t talk about prognosis and outcomes, but they’ve always known about everything. You can’t hide those emotions, and you can’t hide the fact that he’s sick, so they’ve always been a part of all of it, and their life is highly disrupted when he goes through chemotherapy because I go with him, and so people pick them up and take them to school and bring us different foods. It’s very obvious that there’s something going on in our life.
“So when we had an opportunity for the kids to just escape all of that, that’s what Camp Kesem is,” Amy says. “It’s just an opportunity for a kid to be a kid and not stare cancer in the eye every day.”
Camp Kesem is a nationwide network of camps that support children through a parent’s cancer, completely free of charge to the family. Each chapter is founded and led by college students, just as the first Camp Kesem was in 2001. Now with 62 chapters across the U.S., Kesem serves thousands of children ages 6 through 16 each year. Some of their parents have cancer. Some are in remission. Some have succumbed to it. Some have been cancer free for years. Whatever the situation, Kesem provides community and support — and magic. The word kesem means “magic” in Hebrew, the original idea being Camp Kesem’s ability to bring “magic” to families coping with cancer.
In 2013, two students from the University of Colorado Boulder started Colorado’s first chapter of Camp Kesem. Santiago Gonzalez, now a senior in biochemistry at CU Boulder, was one of those students.
Then, Gonzalez was just 18 years old and “looking for something fulfilling” to do with his time, so when a Camp Kesem leader from Vanderbilt University brought the idea to CU when she transferred, Gonzalez jumped at the opportunity to make it happen.
With grant money from the LIVESTRONG Foundation, Camp Kesem CU Boulder was one of 12 new chapters started in 2013, with their inaugural weeks of camp occurring in the summer of 2014.
Gonzalez says planning was overwhelming at times — there was still money to be raised, committees to be chosen, a camp location to book, staff to hire.
“You see these numbers of money you have to raise and you’re like, ‘I’ve never seen that amount of money in my life. I don’t think it’s possible.’ But it is,” he says. “You have to deal with lots of things, whether it’s families or trying to get a medical professional who needs to go to camp or trying to depend on college students. It does cause some really stressful situations, but it’s worth it. I really never have experienced anything like it. I’ve gone to many camps and gone to cool places, but this is a highlight of my college career.”
The CU Boulder chapter held their first summer of Camp Kesem at Cal- Wood Education Center in Jamestown with just over 40 campers. This year’s camp will be held at Camp Shady Brook in Deckers, and Gonzalez says they’re aiming for a minimum of 60 campers. Kids will have access to an array of activities, including an archery range, ropes course and lake for canoeing, swimming or fishing. Experts will be on hand to teach and lead all activities.
The idea, Gonzalez says, is not to focus on whatever is happening at home, but to create community and support.
“At camp we rarely bring [cancer] up,” he says. “I mean, everyone knows why they’re there — it’s kind of the elephant in the room sometimes. At camp we have cabin chats every night where we just sit in our cabin and we hang out kind of as a family. We talk about random things. Sometimes cancer comes up, sometimes it doesn’t.”
Danea Sharp is one of this year’s co-director’s for CU Boulder’s chapter of Camp Kesem. Now 23, Sharp was 14 when she lost her own mother to cancer.
“Even though I’ve experienced what these kids have experienced, sometimes I don’t know the right words to say, but in those moments… even if you’re just crying with them, even if you’re just hanging on to them… you can’t tell them everything’s going to be all right, but you can tell them, ‘Hey, we’re in this together,’” she says.
Amy Visconti says she was impressed with the students running the show at CU Boulder’s Camp Kesem. Her children still talk about counselors who snuck marshmallows into their cabins after curfew. They will both be going back to Kesem this summer.
“When a family is hit with something like cancer … there’s an immediate ‘put everything else on hold’ [mentality],” Amy says. “Your entire focus is on the patient and the cancer, and that’s just life. It’s everything for a while. But for some of us it hasn’t stopped now for two years. At the beginning we were putting our lives on hold and then we realized how fast [our kids] were growing up. We couldn’t put off their childhood anymore. This is the only time they were going to be 7 and 10, so for someone else to scoop them up and take them and let them be kids, that was huge for us.”
For details on this year’s camp, counselor applications and how to donate to the CU Boulder chapter of Camp Kesem, visit campkesem.org.
