South Florida Kid Fights Painful Cancer

6-year-old Aventura boy copes with neuroblastoma with parents' help

Like any six year old, Salvatore Vanni likes to goof around with his buddies, play video games and sing his favorite songs.

But the little Aventura boy also carries a heavy burden called neuroblastoma, a devastating, painful cancer that grabs kids and doesn't let go.

"I try not to think about how unfair this is, " Silvia Vanni, the boy's mom, said through tears. "He's still such a happy child, he's always laughing no matter what he goes through."

It's amazing what Sal has been through. He's been tortured with multiple surgeries and eleven rounds of debilitating chemotherapy since he was diagnosed two years ago with stage IV neuroblastoma. The cancer, which forms in the nervous system, keeps winning.

"It's very stressful. He lies in bed, he'll cry at night, you have to give him opiates like dilaudid, other narcotics to help the pain," Sal's dad, Dr. Steve Vanni, said.

The irony of being a neurosurgeon and having a son with this form of cancer is not lost on Dr. Vanni.

"I ask all the time, why would a neurosurgeon's kid get neuroblastoma? Then I think, maybe my kid got this for a reason, maybe we're gonna be the ones that can do something, which is why we started our foundation," Dr. Vanni said. 

Called the Mystic Force Foundation, the group held a fundraising walk last Sunday at Oleta River State Park which drew about 600 people and raised about $60,000. That money supports research that Dr. Vanni and some of his colleagues at the University of Miami started.

Their goal is not so much to find an outright cure, because Sal probably doesn't have that kind of time. Rather, they're trying to find ways for kids who have neuroblastoma to live with the disease, the way people with aids or diabetes live with their illnesses.

Dr. James Guest is one of the doctors involved in the research. He said progress is being made in attacking the ability of neuroblastoma cells to survive toxic chemotherapy. "You don't know when that hope is going to be realized, but you know if you do persist, there will be gains, and I'm very optimistic about that," he said.

Neuroblastoma is a pediatric disease and in babies, the disease often just disappears. But in toddlers, it's nearly always fatal. Kids with stage IV disease, like Sal, rarely survive even five years. Without a research breakthrough, Sal's chances of doing things in life other kids take for granted, like going to school and playing ball, are almost nil.

"I don't focus on it, I focus on a way to change it," Dr. Vanni said. It's his personal mantra, a way to deflect the agony of seeing his little boy in so much pain so much of the time, knowing Sal's clock is ticking.

"I never lose hope," Silvia Vanni said, as her little boy hummed a tune with a smile on his face. "I don't plan to lose him."

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