A small region of Jefferson County, New York, is rallying around a young student diagnosed with a rare form of cancer. The outpouring of support has also prompted many questions.
Ewing’s sarcoma – a form of cancer that attacks a person’s bones – is quite rare. According to the American Cancer Society, only about 250 children are diagnosed with it each year in the United States. But in this community’s search for answers, what they found was quite shocking.
“Hockey players have to be tough. It saved our lives. It really did,” said Tessie Jones, mother of 9-year-old Hunter Stoffel.
From the moment he first picked up a stick, Hunter Stoffel, now 9, fell in love with ice.
“He definitely learned some values, some courage,” she added.
But less than a year ago, family trips to watch his favorite team, the Buffalo Sabres, turned into weekly trips to Syracuse and Boston for extended hospital stays.
“He was at my house spending the night and you know, he’s talking about his arm. I said, ‘buddy, let me feel your arm. I’ll be gentle,'” said Hunter’s grandmother, Lenore Scheppard.
Hunter felt lethargic and his right arm hurt.
“And my stomach fell into my shoe. I could feel the mass,” she recalled.
Hunter was taken on New Year’s Eve to Golisano Children’s Hospital upstate in Syracuse, where the worst was confirmed. Hunter had cancer.
“So Ewing sarcoma is a fairly rare disease. It may only affect less than one in a million people in the United States,” said Dr. Ajay Gupta, a sarcoma oncologist at Roswell Park Comprehensive Cancer Center. “Ewing sarcoma outcomes have actually improved over time.”
However, there is still much to learn about this rare disease.
“There is no known cause,” he said.
Gupta teamed up with colleagues at Golisano Children’s Hospital in Buffalo to do just that.
“It’s not something that’s passed down from generation to generation or anything like that. Not that we know of,” he added.
The unknown is why Hunter’s family says his story is so important to share, because this story isn’t just his.
“You don’t think it’s real. You’re just sitting there wondering over and over again,” Ashton Marcum said.
Like Hunter, Marcum also lives in the South Jefferson Central School District. His class has perhaps a little more than 125 children each year. Ashton himself graduated last June, just months after learning he, too, would be battling Ewing’s sarcoma.
“It was in my pelvis. It was pushing on my bladder. It was causing a lot of pain all over my leg,” he described.
Ashton began treatments in May, chemotherapy, blood transfusions and more.
“I just tried to gather as much information as possible and continue until the next day,” he added.
Gupta says that if caught early enough, Ewing sarcoma can have an 80 percent survival rate. But the sad reality is that sometimes, by the time of diagnosis, these cells have already taken over.
“It differs depending on exactly where the spread has spread, but if it has spread widely it could be less than 30%,” he said.
This is why it is so important to understand the disease and its warning signs. And in this small town, these families didn’t just find support in each other. They now share their stories. They found their voice.
“I’m a mom who lives in this community and I feel like every mom should be concerned about this,” Lisa Wilson said.
Wilson also lives in southern Jefferson County and knows the heartbreak of illness, having lost her young niece, Madeline, to cancer 14 years ago. She now joins Ashton, Hunter and their families as they seek to raise awareness about Ewing’s sarcoma and its prevalence in their small hometown.
Through an organization she founded called Concerned Citizens, she began speaking and raising awareness about Ewing’s sarcoma at various local government meetings. The more she dug, the more she discovered.
“I realized that my children were starting to attend more cancer benefits for their classmates than birthday parties. That’s not true,” she said.
According to her, the frequency of the disease in this community is shocking. Spectrum News 1 They first met and interviewed Wilson and Scheppard at a local restaurant and what happened when they first sat down was a surprise.
The waiter asked the crew what they were doing there. Lisa and Lenore only had to say a few words before she told them about her son, Tucker. He is also a student at South Jefferson and was recently diagnosed with Ewing’s sarcoma.
“By the way, I just want to say thank you too for everything you do. It’s a lot, honestly. But for real, for real, thank you,” Tucker’s mother told the women.
This represents only half of the city’s suffering. In addition to these three cases, there are at least three other cases in recent years, two of which end in heartbreak.
Eight-year-old Naomi Gushlaw died in 2015, and then just a few days ago, 29-year-old Jordan Hancock died after a recurrence of Ewing’s sarcoma.
That’s why Lisa’s voice gets louder.
“I represent Naomi, Ben, Chasse, Graham, Harrison, Tucker, Jordan, Hunter, Ashton, Kelly and McKenna here,” Lisa said during a meeting.
While the New York State Department of Health says it is working with Jefferson County to “monitor these concerns,” County District Representative Chris Boulio joins Lisa and these families in demanding answers to testing.
“This environment, the farms, the landfill, who knows what could be a contributing factor here. We just don’t know,” said Boulio (R – County District 10).
“You see these beautiful children walking around like ghosts of themselves. We have to do better,” added Lenore Scheppard.
It’s a commitment the community has taken to heart, supporting Marcum through his small victories as he continues radiation and chemotherapy.
“I’m so ready to get it over with, get it over with, get it out, ready to live afterward,” Marcum said.
It’s the same with Stoffel. Recently, he melted hearts with happy tears as he reached a milestone, ringing the bell to signal the end of a series of treatments at the Upstate Cancer Center in Syracuse.
Although there is still a long way to go, it will be a journey that the community takes together.
Wilson says her quest for answers has left her somewhat stuck. The town of Ladera Ranch, California, is also facing a similarly sized group of Ewings, and there the state and county are conducting various environmental tests, but again, New York State says the plan is to continue monitoring.
Several doctors who spoke Spectrum News 1 said, even with six cases in the region, there is a reality in which this is all just a coincidence — as studies of wells and fracking sites across the country have produced no connection — and more cases would be needed to draw conclusions.
Gn Health
