Six-year-old Ariel Blaisdell looks people square in the eye when she talks to them about the cancer she was diagnosed with when she was just 1½ years old.
As her dad, Kyle Wollin, explains the rare form of brain cancer, she flashes a smile and is more direct.
“I have choroid plexus carcinoma. I feel good, though,” Blaisdell said, while attending Sunday’s second annual Kenosha Kids Cancer Buzz event at Coins Sports Bar, 1714 52nd St.
The event raises money for the Shaymus Guinn Foundation benefiting families affected by childhood cancer. The event is organized by the Pleasant Prairie Fighters Local 3785 Charities, the foundation and the sports bar, and is sponsored by Southern Lakes Credit Union.
Blaisdell explains that her brain has been affected by tumors. Choroid plexus carcinoma makes up just 3 percent of all childhood brain tumors, according to St. Jude’s Children’s Research Hospital.
Today, she will have another appointment at St. Jude’s in Chicago to determine whether the last round of targeted chemotherapy she had six months ago has been effective in shrinking the tumors, including some near her brain stem that doctors have deemed inoperable. Blaisdell, who has a full head of long blond hair, is on a drug that doesn’t cause her hair to fall out, Wollin said. The medication, he said, is one that has been used to treat breast cancer.
“They’re helping. And it has seemed to stop the growth for now,” Wollin said. “They’re hoping that, if the cells have stopped dividing, that the old cells will die off. But it’s experimental medicine, and they don’t really have any type of (cure) for it.”
Wollin said, in the beginning, doctors at a different hospital originally told them her disease was terminal, and she was not expected to live past her second birthday.
“We started in Milwaukee, and they gave her a month or two to live,” he said. “They said there was nothing they could do.”
They initiated chemotherapy prior to the initial diagnosis, but stopped as it was affecting her quality of life. At one point, Blaisdell was in hospice care.
“But she’s always been spunky and has that bright personality,” Wollin said.
Later, a few faster-growing tumors were removed to alleviate pressure in her head, he said. For the last three years, the family has benefited from the foundation and the community’s generosity, something Wollin is grateful for.
“This is an awesome turnout,” he said of the dozens of people who pledged to raise money for the cause. “I love seeing everybody come together and working with this awesome thing. We couldn’t have done the things we needed to without the help that we got from the Shaymus (Guinn) foundation.”
A few years ago, Wollin didn’t have a car and was relying on borrowing vehicles from family members to get to appointments until the foundation helped him purchase one.
Valerie Duffeck, who established the foundation, recalled how two weeks before Shaymus died in 2012 Shaymus wanted to be able to do something for kids.
“I said, ‘We can do that.’ And he said, ‘I’d like to get them art supplies because most of us are in bed so much we can’t get out most of the time,’” Duffeck said.
The Burlington boy was 11 when he died of Ewing’s sarcoma, a rare form of bone cancer. He would’ve been 18 on Saturday, she said.
To honor Shaymus, the foundation has played host to a fundraiser in his name for the last two years in Kenosha and eight years in Racine.
“These firefighters have really been wonderful. Coins has been wonderful,” she said.
From the Kenosha fundraising event, a total of six children and their families are being served. Sunday’s event is expected to raise at least $9,000. Including both communities, the foundation gives out a total of $35,000 annually, which has helped families of children with cancer to buy Christmas gifts, groceries, aided with rent, transportation, entertainment and funeral costs.
“Shaymus was very selfless, and he wanted to do stuff for other kids,” she said.
Marc Lois, president of the firefighters’ group, said this year’s event was expected to draw as many as 75 people — up from about 50 a year ago — pledging to have their heads shaved to help the foundation.
“I think a lot of it is, when the kids are going through the treatment, they’re losing their hair. So then, when they can see an adult or someone they might look up to (shave their head), they feel like they can relate, and they don’t think it’s so bad they’ve lost their hair,” he said.