Kamp KACE in full swing at Cormorant
Cancer is being upstaged this year as its youngest fighters put their worries behind them and concentrate on different business ... show business.
The theme for campers at the YMCA camp outside of Cormorant this year is "Kamp KACE goes to Hollywood."
The camp, which started Sunday and runs through Friday, is designed for children who have either had or are currently fighting cancer.
And Kamp KACE (which stands for Kids Against Cancer Everywhere) is bursting at the seams with children from all over the region, as they have a record 105 campers -- about a quarter of whom are new to the camp this year.
Tending to every need those campers have are the 55 volunteer counselors, who are giving up a full week of their own time to help make this camp a go.
Some of those counselors were campers at one time, including 28-year-old Lindsay Johnson of Pelican Rapids, who was only six years old when she first came to Kamp KACE, up to her chin in chemotherapy from her Non-Hodgkin's lymphoma.
"I was so excited; I had my bag packed two weeks before coming," she said, smiling. "And I loved it. I still remember some of the songs we sang. I went for 10 years."
Johnson beat her cancer after a year and half of treatments, but celebration was short-lived. Seven years later, her mother was diagnosed with the exact same disease.
"She passed away from it," she said, explaining how her father eventually remarried. But just last fall, cancer struck her family for the third time ... this time, it was her younger stepbrother, AJ -- a 16-year-old athlete who thought he was just having knee problems.
It turns out he had osteosarcoma -- a bone cancer.
"I remember when I heard about it, my initial thought was, my poor dad has to go through this again," said Johnson, tearing up. She says her brother, AJ, had to have one of his legs amputated above the knee.
"But he is taking it better than anybody," she said, gushing with admiration for her brother, who was out on the lake.
He had asked her to be a counselor at the camp.
Now, attending the camp as an adult, Johnson says she sees how completely random the disease is for children.
"You see the cars roll up the first day when the parents are dropping their kids off, and that's when you realize ... cancer does not distinguish between if you have money, or if you don't or ethnicity -- it hits everyone," Johnson said, "You watch the kids get out, and it's a broad spectrum. It's everyone."
That's what makes this camp so important to campers, who might otherwise be considered a "patient" instead of a regular kid. Everybody is the same ... at least for that week.
"I see many of these kids in the hospital hooked up to their IV's with their chemo hanging and they are sick," said Melissa Schmautz, Kamp KACE's lead counselor and a child life specialist at Sanford Children's Hospital in Fargo. "So it's very rewarding to see them out here running around just like they should."
Schmautz says attitude and emotional support are incredibly important for the young cancer fighters, and Camp Director Kim Belgarde says that's exactly the kind of boost they get at Kamp KACE.
"We've seen kids come in here who are very sick, and they leave with a whole different attitude - like, 'yes, I want to live; I want to beat my cancer," said Belgarde, adding there are 12 campers on active cancer treatment, including a few who have to leave camp for chemo treatments.
Those are the ones who are watched very closely by the five nurses and two doctors that stay at the camp. One of those doctors is the camp's founder, Dr. Janet Tillisch, a pediatrician out of Fargo who also specialized in oncology. She was instrumental in creating the camp 26 years ago.
Tillisch says she remembers a few years in the early period of Kamp KACE when she thought volunteers were going to have to pitch in money just to make the camp happen.
Now, she says, the organization has been embraced by "great donors, sponsors and people who do fundraising," including a large donation from NHL Pro Matt Cullen, who contributes greatly to the camp through his foundation, Cully's Kids. It's those donations that make the camp a free one to attend.
"Now, I have no doubt that this will continue on long after I'm retired or whatever," said Tillesch, adding that as exhausting as the camp can be for adult volunteers, the kids keep them coming back for more.
"Just look at them," she smiled, pointing to campers jumping around, laughing, "My cancer kids are having fun!"
Siblings are also having their share of fun, because according to camp leaders, they too have been affected by cancer ... just in a different way.
"This gives us time to just have fun and be kids," said Ryan Roble of Frazee, whose 14-year-old brother, Jacob, fought off two bouts of leukemia.
"He got most of the attention, and I didn't get to see him much. My parents had to be with him a lot too, so I couldn't see them as much either."
And although Jacob has been cancer-free for three years, he and his brother continue to come to Kamp KACE, and don't plan on stopping. In fact, they both said they could see themselves as camp counselors someday.
This week at Kamp KACE, Detroit Lakes nine-year-old Ashtyn Carrier might be busy swimming, jumping on inflatable games and tormenting her brothers a bit, but two years ago she was busy with needles, chemo, blood tests and a life-saving bone marrow transplant.
Although Ashtyn didn't have cancer, her rare disease called Hemophagocytic Lymphohistiocytosis (HLH), was similar enough to need the same treatment and was just as life threatening.
Now healthy, the typical, energetic soon-to-be fourth grader doesn't just remember what she went through as the family uprooted for about a year for treatment in Cincinnati, but what her little brothers went through as well.
"They didn't really have any friends because we didn't know anybody there ... they said they felt like they were left out because they didn't get very much playtime with mom and dad," said Ashtyn, picking at the grass and pointing out her brothers, Mason and Ethan. "We've all made friends here already though," she said, smiling.
Camp leaders say friends made at this camp often last for years, sometimes even during the rest of the year as the young cancer fighters have at times found themselves in a little reunion in the hospital ... making stays a little more tolerable as they swap camp stories.
"You have a lot more stuff in common with everyone here," said 13-year-old Grace Woods of Thief River Falls, who is just now growing her hair back from some seriously strong chemo treatments, which ended only a few weeks ago. "But we only talk about our cancer at the beginning of camp, then we don't really have time for it after that," she said.
It may be tough to find too much time for cancer jibber-jabber when "Kamp KACE goes to Hollywood" brings in big stars like "Rose Bud."
"That's one of the Golden Retrievers from the Movie "Santa Paws," said Belgarde. "She belongs to one of the campers who got her for her "Make a Wish," so it's a pretty big deal."
Campers will also be walking the red carpet Thursday, as a hummer-limo makes its way to the camp. Local Lions Club members will be dressed in tuxes and serving up dinner to the campers, who of course, will also be in formal attire.
"They'll enter the limo from one side and when they go out the other side, there will be a little red carpet they'll walk down, and it should be really, really fun for these kids," said Belgarde.