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In Cameron's memory: Family continues to raise money and awareness after chordoma takes their young son

"We just really don’t want other families to have to go through what we have.”

4/12/2016
Taking action

Cameron Riccomini was nuts about sports: his favorite birthday party was one where he and his friends played dodgeball and T-ball for hours.

In his short life, Cameron got to travel to many of America’s greatest sports cities: New York, Boston, Pittsburgh, Cincinnati. Unfortunately, he and his family weren’t there to cheer on the sports teams. They were there – often for weeks or months at a time – for multiple surgeries and other treatments for his persistent, recurring clival chordoma.

Cameron was diagnosed with chordoma in February 2008 at age five, after his parents, Colleen and Rich, became increasingly concerned about their son’s frequent headaches and night terrors. The diagnosis thrust the Long Island, New York family into a five-year whirlwind of doctor’s appointments, surgeries, radiation and chemo, and clinical trials as they did all they could to save their child’s life. The heartbreaking battle came to an end in November 2012, when Cameron was just ten years old.

“Cameron was a spitfire,” his mother says. “For a young kid, he’d been through so much, but he took it all in stride.

“Like most kids, Halloween was Cameron’s favorite holiday. But just before he died, we had another surgery scheduled for October 31 (the third Halloween that he’d miss for treatment or surgery). And my kid’s just like, ‘No big deal. Let me have the surgery,’” says Colleen, still awed by her son’s positive outlook. “Sadly, just before the surgery, things spiraled downward, and we went to hospice.”

Older brother Conor, who was 13 when Cameron passed away, wanted to do something to honor his brother – and a dodgeball tournament seemed like something Cameron would have loved. In 2012, Conor organized the first tournament at the local high school to raise money and awareness for this rare form of cancer. In 2015, realizing that Cameron would have been a middle schooler had he survived, Conor moved the event to the school Cameron would have attended. At the 2016 event, a record 236 sixth, seventh, and eighth graders dodged and threw balls and had a great time playing the game that Cameron loved. Every year, proceeds from team fees and sales of water, candy, and baked goods go to support the Chordoma Foundation.

The Riccominis also started an annual pub crawl in eastern Long Island to raise money for the Chordoma Foundation. In fall 2015, 250 participants enjoyed drink and food specials at local bars and restaurants while raising money for chordoma research and patient support. Conor’s band even kicked off the pub crawl with some classic rock.

“This disease really stinks; it is often not a rosy picture,” Colleen shares honestly. “We do truly believe that one day something close to a cure will be found, that the Chordoma Foundation can help us get there, and so we keep on raising money. We just really don’t want other families to have to go through what we have.”

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