A small region in New York’s Jefferson County is rallying around a young student with a rare form of cancer. The outpouring of support also led to a lot of questions.
Ewing sarcoma – a form of cancer that attacks a person’s bones – is quite rare. According to the American Cancer Society, only around 250 children are diagnosed with it in the United States each year. But in that community’s quest to find answers, what they found, was quite shocking.
“Hockey players have to be tough. It’s been a lifesaver for us. It really has,” said Tessie Jones, the mother of 9-year-old Hunter Stoffel.
From the moment he first picked up a stick, now 9-year-old Hunter Stoffel fell in love with being out on the ice.
“He definitely learned some values, learned some grit,” she added.
But less than a year ago, family trips to see his favorite team, the Buffalo Sabres, turned into weekly trips to Syracuse and to Boston for extended stays in hospitals.
“He was over at my house spending the night and you know, he’s talking about his arm. I said, ‘buddy, let me feel down your arm. I’ll be gentle,’ ” Hunter’s grandmother Lenore Scheppard said.
Hunter was feeling lethargic, his right arm in pain.
“And my stomach just dropped into my shoe. I could feel the mass,” she recalled.
Hunter was taken on New Year’s Eve to upstate Golisano Children’s Hospital in Syracuse, where the worst was confirmed. Hunter had cancer.
“So, Ewing sarcoma is a pretty rare disease. It only happens in maybe less than one in a million folks in the U.S.,” said Dr. Ajay Gupta, sarcoma oncologist at the Roswell Park Comprehensive Cancer Center. “Outcomes in Ewing’s sarcoma have actually improved over time.”
However, there is still so much about this rare disease to learn.
“There is no known cause,” he said.
Gupta has teamed up with colleagues at the Golisano Children’s Hospital of Buffalo to do just that.
“It’s not something that’s passed along 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 that story is not just his.
“You don’t think it’s real. You’re just kind of sitting there, just questioning it over and over,” Ashton Marcum said.
Like Hunter, Marcum also lives within the South Jefferson Central School District. Its graduating class is maybe a little more than 125 kids each year. Ashton himself graduated this past June, just a couple of months after learning that he, too, would begin a battle with Ewing sarcoma.
“This was in my pelvis. It was pushing on my bladder. It was causing a lot of pain throughout my entire leg,” he described.
Ashton began his treatments in May, chemotherapy, blood transfusions and more.
“I just tried to take in as much information as I can and just go on through the next day,” he added.
Gupta says if found early enough, Ewing sarcoma can have an 80% survival rate. But the unfortunate reality is sometimes when diagnosed, those cells have already taken over.
“That differs based off of where it spread exactly, but if it spread widely, that could be less than 30%,” he said.
It’s why understanding the disease and its warning signs are so important. And in this small town, not only have these families found support in one another. They are now sharing their stories. They have found their voice.
“I am a mom that 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 she knows the heartbreak of the disease, losing her young niece, Madeline, to cancer 14 years ago. She’s now joining Ashton and Hunter and their families looking to raise awareness of Ewing sarcoma and its prevalence in their small hometown.
Through an organization she founded called Concerned Citizens, she started speaking, raising awareness of Ewing sarcoma at various local government meetings. The more she dug, the more she uncovered.
“I realized that my kids were starting to attend more cancer benefits for their classmates than birthday parties. That’s not right,” she said.
Just how common the disease is in this community, she says, is shocking. Spectrum News 1 first met and interviewed Wilson and Scheppard at a local restaurant and what happened when they first sat down was a surprise.
The server asked the crew what it was doing there. Lisa and Lenore only had to speak a few words before she told them about her son, Tucker. He’s also a student at South Jefferson — and was also recently diagnosed with Ewing sarcoma.
“I just want to say thank you too, by the way, for everything you guys are doing. It is a lot, honestly. But for real, for real, thank you,” Tucker’s mother told the women.
That’s just half of the town’s pain. In addition to these three cases, there have been at least three others in recent years, two of them ending in heartbreak.
Eight-year-old Naomi Gushlaw died in 2015, and then just days ago, 29-year-old Jordan Hancock passed away after a reoccurrence of Ewing sarcoma.
It’s why Lisa’s voice is growing louder.
“I’m here representing Naomi, Ben, Chasse, Graham, Harrison, Tucker, Jordan, Hunter, Ashton, Kelly and McKenna,” Lisa said during one meeting.
While the New York State Department of Health says it is working with Jefferson County to “monitor these concerns,” the county’s district representative, Chris Boulio, is joining Lisa and these families to call for testing answers.
“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 that are walking around looking like ghosts of their former selves. We need to do better,” Lenore Scheppard added.
It’s a pledge 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 through, get it over with, get it out, ready to just live on after it,” Marcum said.
It’s the same with Stoffel. Recently, he melted hearts with tears of happiness as he completed a major milestone, ringing the bell to signal the end of a round of treatment at Upstate Cancer Center in Syracuse.
While there may still be a long road ahead, it’s going to be a journey the community takes together.
Wilson says her quest for answers has left her feeling somewhat stonewalled. The town of Ladera Ranch, Calif., is also dealing with a similar sized cluster of Ewing, and there, the state and county are doing various environmental tests, but again, New York State says the plan is to continue to monitor.
Several doctors who spoke to Spectrum News 1 said, even with six cases in the region, there’s a reality in which this is all just a coincidence — as studies on wells and fracking sites across the country haven’t produced any connections — and there would need to be more cases to draw any conclusions.
Source: spectrumlocalnews.com
