Camp, cheer bus aim to bring joy to kids with cancer and their siblings

The little girl was 6. And she was losing her hair due to the chemotherapy and radiation and all Melissa Firmes, then 24, could do was watch as another 6-year-old girl took a brush to her friend's head, explaining how she knew how she felt since she'd had to wear a wig during her own cancer treatment.

How that wig itched so badly she'd finally decided to just be bald.

This was 1996 at a weeklong summer camp run by the American Cancer Society on Shelter Island. For Firmes it was life-changing.

Years later Firmes would take over the camp from the ACS, making it the cornerstone of an Amityville-based nonprofit charitable organization called KIDS NEED MoRE — the O being a heart logo — dedicated to "enhancing the lives of children and families coping with cancer and serious illness."

In addition to Camp Adventure, a weeklong summer sleep-away camp for kids aged 6-18 coping with cancer, the organization also runs its Christmastime HoLiDAY Cheer Bus, when volunteers dressed as elves take to decorated "cheer" buses to deliver toys, sing carols and "spread joy" to hundreds of sick kids and their families across Long Island.

Though COVID-19 forced the camps to go virtual this year, Firmes has pledged the bus brigade, following strict pandemic protocols considering the vulnerabilities of children and households they'll visit, will distribute toys as scheduled on Dec. 20.

"When that girl began to brush the other girl's hair," Firmes, 47, of Copiague, this week said of that moment almost 25 years ago now, "I couldn't believe what was happening. They were expressing themselves. She was upset about her hair, they were so vulnerable, yet they were just being kids … What an intimate window it was into their lives. I hadn't expected it, I hadn't understood until that moment, and it changed my life. It made me understand that when you're a kid you can't get six years old back again."

Firmes grew up in Farmingdale, graduated Farmingdale High School, got her associate degree at SUNY-Farmingdale and her bachelor's at St. Joseph's College, thinking she would spend her life as a schoolteacher. And then when she was 24 she volunteered to work at that ACS summer camp.

The camp was for children with cancer and their siblings who didn't have cancer. The basic idea was to break down barriers, form bonds, make sick kids and their well siblings understand there was a world of others and their families going through the very same things. That they weren't alone.

Firmes had grown up with two biological siblings and two adopted siblings and said that over the years her parents housed and helped parent more than 200 foster children, including those on emergency stays, so she got it.

Still, little did she know the lasting impact of that first solitary week.

Because of that first camp experience Firmes continued to volunteer. She met her future husband, now KIDS NEED MoRE treasurer Johnny Ray, when he was a volunteer at Camp Adventure in 1998. She later agreed to take over the camp from the ACS, then turned it into KIDS NEED MoRE with a helping hand from Cassandra Steinle, a camper who had been diagnosed with Stage 4 neuroblastoma at 15 months and somehow survived it, only to die of treatment-related lung complications just before her 15th birthday — her death coming a few months after Firmes ran her first camp in 2013.

Cassandra's brother, veteran camper turned volunteer John Steinle IV, 16, of Smithtown, said this week: "I know I can't speak for everybody, what they've experienced. But I should have been a depressed kid, with everything that happened.

"But I wasn't sad. I'm not sad."

As Steinle said of KIDS NEED MoRE and the time he spent with his late sister and other campers: "It gave me a sense of, not peace, but that I'm not the only one who went through this. I think of times I had with my sister and they're good times."

Not that making all of this happen has been simple, Firmes said.

She and Ray got married in 2012, had their honeymoon cruise to the Bahamas sidetracked by Superstorm Sandy, returned home the day Sandy hit Long Island, destroying their Copiague home. They moved into her mother's den, then rented an apartment in Farmingdale while their house was being rebuilt, all while Firmes was trying to raise $300,000 to fund KIDS NEED MoRE. Then, having finally launched and run the camp on her own, Cassandra Steinle was hospitalized, and Firmes, racing to come see her, got into a car accident en route.

"She got there a few moments after my daughter actually passed," Eleanore Steinle said. "But that's her dedication. She had a car accident and still came."

That Firmes continues to devote every waking minute to KIDS NEED MoRE — with the assistance of institutions like Stony Brook University, donations from individuals and grants from organizations like the Rite Aid Foundation's KidCents program and The Spencer Foundation in Huntington — also is, in part, due to her own experience with cancer.

Firmes was diagnosed with leukemia weeks after Camp Adventure in 2014 and underwent a bone-marrow transplant Jan. 7, 2015.

Under KIDS NEED MoRE Firmes moved the summer camp, Camp Adventure, from Shelter Island to upstate Roscoe, and has expanded the holiday Elf ride toy giveaway from one bus to dozens of buses that will hit the road next weekend.

And KIDS NEED MoRE volunteers continue almost daily check-ins and contact support with sick kids, their families and surviving siblings.

"They're kids," Firmes said of her audience. "Sick kids, siblings of sick kids, parents of kids who are ill, kids who've just lost parents. These are kids and kids still have to have joy. They have to have joy through their pain. And that's what we try to do. To bring them joy."

By John Valenti

john.valenti@newsday.com

John Valenti, a reporter at Newsday since 1981, has been honored nationally by the Associated Press and Society of the Silurians for investigative, enterprise and breaking news reporting, as well as column writing, and is the author of “Swee'pea,” a book about former New York playground basketball star Lloyd Daniels. Valenti is featured in the Emmy Award-winning ESPN 30-for-30 film “Big Shot.”