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Camp Kesem Mizzou helps kids be kids

Giving children of cancer patients the fun they need to cope

August 2, 2012 | 12:00 a.m. CST

Camp Kesem can be found through universities from all around the nation. Photo courtesy of Camp KesemKimberly Carr with her husband, Dan, and sons Graham, Miles and Finn before she was diagnosed with breast cancer. Photo courtesy of Kimberly CarrWhen their mother died of lung cancer, Christina Robinson transitioned from sibling to caretaker for her sister, Sam. Photograph by Robert SwainChristina and Sam hold a photo of Sam and their mother, Rhonda, when she was sick. When Rhonda died, Sam was only 5 years old. Sam is excited to start camp Sunday. Photograph by Robert Swain

The same week Christina Robinson was preparing to graduate from high school, her mother, Rhonda, told her something unexpected. At 42, Rhonda was pregnant. A year and a half later, she revealed even more shocking news: She had lung cancer, and the outlook wasn’t good. When Christina was 25 and her sister Samantha was only 5, their mother passed away.

About Camp Kesem

“Kesem” means magic in Hebrew. Camp Kesem Mizzou is for kids ages 6 to 13 who have had a parent battle cancer. In addition to the week-long camp, reunions are planned to continue the support throughout the year.

How to sign up: Camp Kesem Mizzou will accept campers until the day camp starts. Download the application at campkesem.org/missouri. Fill it out, and return it to the camp office at 1601 University Ave.

When: Sunday through Aug. 10
Where: Camp Mihaska in Bourbon
Cost: Free
Call: 314-630-0963

For more information, email: Mizzou@CampKesem.org

“Before my mother died, she said, ‘I need to know if you want Sam,’ and I said, ‘Absolutely, without a doubt,’” Christina says.

For the past three years, Christina, 28, has been raising Sam, now 9, while working and preparing for medical school. Sam has always had plenty of support from Christina, but she has never been around other children who have lost a parent to cancer. “There are a lot of kids her age who don’t know anything about death,” Christina says.

Unfortunately, though, many kids have experienced the fear and confusion of watching a parent battle cancer.

When Graham Hanson was 11 years old, all he wanted to do was enter middle school with some semblance of normalcy. Having a mom with no hair wasn’t so normal.

Graham was just finishing fifth grade when his mother, Kimberly Carr, was diagnosed with breast cancer. Although her prognosis was good, she still had to undergo chemotherapy, which caused her to lose her hair. Graham and his 7-year-old brother, Miles, were mortified. Kimberly says, “If I was going somewhere and they didn’t approve of what I was wearing, it was always, ‘Mom, aren’t you going to wear your wig? Mom, put a hat on!’”

Although her boys knew what she was going through, they were still kids, and Kimberly remembers her sons wanting everything to be as normal as possible.

A stay-at-home-mom, she discovered soon after starting chemo that her energy level was no longer what her kids were used to. They wanted to spend their summer having fun, but Kimberly’s treatment made her uncharacteristically tired and grouchy.

“I knew it was hard on the kids,” she says. “You can deal with yourself, but to know that you’re maybe not doing everything you want to do for your kids is the hardest part.”

So Kimberly turned to Google for help. She sat down at her computer, and in the search engine box she typed, “kids camp parents cancer.”

If it doesn’t exist, create it
In January 2011, MU student Adam Ryan decided to look for a summer job. He Googled “cancer camps.” His interest in working for a camp specially designed for children whose parents have or have had cancer wasn’t random. When he was 15, his mother was diagnosed with breast cancer.

“She’s a survivor,” Adam says, “but I always enjoyed working with people who’ve been affected by cancer because I’ve been there. On top of that, I’m an education major, and I love kids, so it just seemed like a perfect fit.”

His search turned up Camp Kesem, a summer camp started at Stanford University in 2000 that expanded to include branches at college campuses across the nation.

The mission of Camp Kesem is “To provide children affected by a parent’s cancer with a supportive, lifelong camp community that recognizes and understands their unique needs.” The kids are welcome to return year after year — even if a parent no longer has cancer — and they are invited to reunions after summer camp ends.

Adam emailed one of the national directors, who informed him that there wasn’t a chapter in Missouri but he was welcome to start one. He applied to start a new Camp Kesem branch through MU. “From the very first email to the camp, it will have been a 19-month process for me,” Adam says, “but absolutely worth every minute.”

The first step in bringing Camp Kesem to Missouri was fundraising. In May 2011, Camp Kesem Mizzou was one of 12 in the country to receive a $10,000 grant from Livestrong through its Community Impact Project. The award was the result of a national voting contest, and Adam’s camp won the most votes in its region.

Having the talk
Camp Kesem was the first result of Kimberly’s quick online search, and she immediately began trying to secure spots for her two boys. Kimberly and her family live in Minnesota, but at the time she was diagnosed, the nearest Camp Kesem branch was through the University of Wisconsin in Madison. Luckily, there were still a few spots open.

Kimberly says she tried not to focus solely on the fact that the camp was for kids whose parents have cancer. She showed them pictures of the camp online, and they went over the schedule of events and activities together. Graham was immediately on board, and anything Graham wanted to do, Miles wanted to do, too.

Once the boys were enrolled and they began to grow more excited about attending, Kimberly knew she had to discuss the fact that other kids at the camp would have parents who had cancer and that some of their stories would not have the positive ending Kimberly’s did.

“I think the only thing we talked about was that there would be kids who would have a different situation,” Kimberly says. “Just because that was their situation doesn’t mean that was going to be our situation. My prognosis was very good, so we never went down the ‘I might die’ road. I didn’t want them coming home and thinking that.”

Her boys did come home different, though.

Countdown to Missouri’s Kesem
With the inaugural Camp Kesem Mizzou less than a week away, Adam and his crew are finishing their training and finalizing the schedule of activities. They will continue to register campers until the day camp begins.

The camp will be held at the Salvation Army-owned Camp Mihaska in Bourbon, a small town about two hours southeast of Columbia.

Adam is excited to make use of the camp’s water park and ropes course, and although he says zip lining will be terrifying for him, he refuses to admit to a fear of heights.

One thing Adam definitely isn’t afraid of is meeting with groups of strangers to talk about Camp Kesem. For months, he’s been going to cancer support groups to meet with parents and answer questions. Adam says the most frequently asked question about the camp is, “How much will you talk about cancer?”

“The goal of the camp is to just have fun, to be the ultimate summer camp possible for the kids,” Adam says. “With that said, we want them to leave more confident about their situation and more confident about themselves, to have more empathy and to be able to relate to their parents a little more.”

Every night, the campers and counselors participate in structured conversations called “Cabin Chats,” in which campers can talk about anything from their favorite hobbies to how they feel about a parent being sick. Adam notes that by the second or third day of camp, most of the kids have figured out what they all have in common with one another and even with many of the counselors and staff members.

At the end of the week, the entire camp meets for an “Empowerment Ceremony,” during which everyone is welcome to discuss what he or she has been going through in front of all the other campers.

“It’s one of the more emotional times where all the camp comes together,” Sarah D’Amico, head of camper care at Camp Kesem Mizzou, says. “Everyone says it’s the moment during camp when barriers are broken down and where the kids really make a change, and they can grow from that.”

A cure for the kids
The week Kimberly’s boys were gone for camp, she had another round of chemo. She brought a copy of the camp schedule with her and followed the activities Graham and Miles were doing while medicine pumped through her veins. Knowing they were swimming or having color wars was comforting, but naturally, she worried.

“When my mom picked them up, I was expecting a phone call right away,” she says. Nearly half an hour after her mother picked up Graham and Miles, Kimberly made the call herself, only to hear the news that the boys were in tears. Neither of them wanted to leave camp and their new friends.

Miles, who Kimberly describes as more shy and sensitive than his older brother, had the hardest time leaving. She recalled dropping him off at camp and the look of hesitation on his face. All week she had worried that he would call her, desperate to come home, but by the end of camp, he was desperate to stay. The Miles who returned home to Minnesota was not the child Kimberly had dropped off only six days before.

“When they came home, it was seriously like a time warp,” she says. “The kids that I had before had cancer, too, and the kids that walked in the door could not stop talking about how much fun they had.”

When recounting her sons’ revelatory return, Kimberly’s voice starts to break, and she pauses for several seconds. “For me,” she says, “the biggest thing was that they helped my kids remember how to be kids again, which is something that, at the time, I couldn’t do. It was such a gift to have that. It was better than anything I could have done.”

Camp CoMo
Even though camp hasn’t started yet, Adam is already overwhelmed by the support he’s received and the difference Camp Kesem makes in the lives of both families affected by cancer and the students who participate as counselors.

Christina and Sam will soon benefit from the time and talents of the local Camp Kesem counselors and board members such as Adam and Sarah. Sam’s elementary school counselor heard about Camp Kesem and suggested it might be a good fit for Sam.

Christina was excited to learn the camp is free, thanks to the fundraising work of Adam and everyone else involved. Without money as an obstacle, Christina registered Sam for camp, and the countdown began.

“I’m super excited for her to meet peers like her who have gone through the same thing and to see how well they’ve overcome these obstacles,” Christina says.

The sisters have been shopping for a new warm-weather sleeping bag and have begun lessons in journaling so Sam can write about her experiences. Sam is so excited to go to camp, Christina says, that if the start date were suddenly moved up, Sam would gladly stay up all night packing.

Christina has also written Sam one letter for each day she’s at camp, in case she gets homesick and, Christina says, “to remind her every day that I love her.”

The same day Sam goes away to camp for the first time, Kimberly’s sons will start their Camp Kesem adventure in Wisconsin for a third time. Graham and Miles are now enjoying time with a mother whose cancer is in remission.

Adam received his bachelor’s degree this May and will start graduate school at MU in the fall.

Adam, Graham and Miles are already planning on returning to Camp Kesem next summer — Adam as a campus alumni representative in Missouri and Graham and Miles as camper-ambassadors in Wisconsin for kids who are currently struggling with a parent’s cancer.

“My kids are there for the ones who are still going through it,” Kimberly says. “They can say ‘Oh, I remember that. It gets better.’”

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