Camp Adventure leader stricken with leukemia

COURTESY PHOTOS Camp Adventure CEO Melissa Firmes-Ray during her recent month-long stay at Stony Brook University Hospital for treatment of acute myeloid leukemia. She’s now home, waiting for a phone call that a life-giving stem cell donor has been found.

COURTESY PHOTOS
Camp Adventure CEO Melissa Firmes-Ray during her recent month-long stay at Stony Brook University Hospital for treatment of acute myeloid leukemia. She’s now home, waiting for a phone call that a life-giving stem cell donor has been found.

Irony.

That’s how some are characterizing the reality that a woman who has volunteered more than 20 years of her life to running a Shelter Island camp for children with cancer and their siblings has herself been diagnosed with acute myeloid leukemia.

But that’s not how Melissa Firmes-Ray of Copiague views her diagnosis.

“I’m not special because I do the work that I do,” said Ms. Firmes-Ray, the director of Camp Adventure at Quinipet. “My immediate response was pretty typical — I couldn’t believe it,” Ms. Firmes-Ray said about hearing her diagnosis from doctors at Stony Brook University Hospital. She had been tired and experiencing night sweats in August, but attributed that to the end of the busy camp season and her otherwise full life.

After undergoing intensive tests and chemotherapy that kept her in Stony Brook University Hospital for a month, she continues outpatient treatments, awaiting a life-saving phone call she’s been told could come any day.

Ms. Firmes-Ray needs a stem cell transplant and that means finding a donor with the appropriate genetic markers to be her savior.

As she was leaving the hospital, she posted on Facebook: “Confined to one room, visitors forced to hide their smiles behind a mask and kept tethered to a line of fluids running into my achy bruised arm … I’ve grown wings that will help me fly … I’ve learned how not to try and be something, but to just be.”

“You toughen up a lot faster than you think you’re going to,” she said about dealing with the reality of her illness.

Unlike many of her Camp Adventure family members who are able to battle other forms of leukemia through chemotherapy, that’s not her long-term option, she said last Saturday.

Her experience with Camp Adventure couldn’t prepare her for the devastating diagnosis she received on September 23. But it would help to be surrounded by that family of fellow cancer survivors who turned out in large numbers to support her struggle.

She’s received a barrage of cards, notes and constant visits from those she has supported at Camp Adventure for over two decades.

Despite the painful bone marrow tests she’s had to undergo, “I never once felt that I didn’t want to see people,” Ms. Firmes-Ray said. “It’s so good for me that they wanted to be there for me.”

She has shaved her head in the past in solidarity with Camp Adventure kids, but admits she didn’t realize how much it meant until she was on the receiving end of that support.

The one aspect of cancer care on which she hadn’t focused turns out to be where all of her attention is now — “Be The Match,” operated by the National Marrow Donor Program, is where her best hope lies for recovery.

“We should have been doing Be The Match drives all along,” Ms. Firmes-Ray said.

Potential donors who register with the organization can’t designate their bone marrow and stem cell donations to go specifically to her, but the more people in the registry, the more likely those in need of transplants find matches, Ms. Firmes-Ray said.

For a donor, the process begins with a simple cheek swab. Donors are generally chosen from those who are between the ages of 18 and 44.

Full details about how a person is screened and then prepared for donation if there’s a match are available at bethematch.org.

“It will continue, no matter what,” Ms. Firmes-Ray said about Camp Adventure’s future.

Her advice? Get periodic blood tests to detect problems early. Seniors often undergo regular blood tests for other health issues, but younger people are less likely to do so, Ms. Firmes-Ray said.

While she undergoes tests and treatments, she has — with the support of her husband of two years, John Ray — managed to eke out some special moments of happiness. They celebrated their second wedding anniversary in her hospital room at Stony Brook where Mr. Ray hired a Tom Jones impersonator and violinists to mark the special occasion.

The experience is captured on both her Facebook and Twitter pages with the title, “All you need is love and bone marrow.”

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