The Vannis’ living room doesn’t stand out from that of other families who have five children: a big comfortable couch, photos of the kids scattered about, and a large-screen TV. But concealed among the clutter in their North Miami Beach home are the ashes of their youngest son, Sal, who died at 7 from neuroblastoma, an aggressive childhood cancer.
“I’m a neurosurgeon and unfortunately I’ve treated patients with neuroblastoma and I know what the prognosis is,” said Dr. Steven Vanni, 52, Sal’s father and neurosurgeon at the University of Miami Miller School of Medicine.
“So when I found out, I was like, ‘Oh my God, my kid’s going to die,’” he said.
Sal, who died in 2011, was diagnosed with stage IV neuroblastoma when he was 4; doctors told his parents he had a 20 percent chance of living five years.
It all started the day Sal complained of pain in his leg. Within one week, the pain progressed to the point where he couldn’t walk. His father took him in for an X-ray, but the radiologist misinterpreted it as “normal.” Then the doctors did some blood work, and that’s when they knew something was wrong.
“The blood work showed he was very anemic,” Steven Vanni said. “His inflammatory markers were very elevated, it meant something was wrong that the doctors were missing.” Steven Vanni then showed it to a friend of his at UM, an orthopedist, who thought the bone looked a little swollen and suggested he take the film to an oncologist. That’s when Sal was diagnosed.
According to the U.S. National Library of Medicine, neuroblastoma is a malignant tumor that develops in children usually before age 5. One in 100,000 children are diagnosed each year and it is slightly more common in boys. By the time it is diagnosed, it has often spread to other parts of the body, most notably the abdomen, the adrenal glands near the kidneys or in the chest.
Dr. Guillermo De Angulo, a pediatric oncologist at Miami Children’s Hospital, and “Sal’s favorite oncologist,” according to his mother, Silvia, explained there was nothing his dad could have done.
“Stage IV neuroblastoma is a very aggressive form of the disease,” he said, and Sal had a large tumor in his stomach.
Steven and Silvia, 47, decided they were going to do everything they could to beat the odds. For the next three years, Sal received treatment in five states.
“The day after we found out he had neuroblastoma, we flew to Sloan-Kettering [New York] and spent 18 months there,” said Silvia, wiping away tears.
After failed rounds of chemotherapy and other conventional treatments, the Vannis made Miami their home base again and decided to try clinical trials.
“Steven would come home from work and go onto to www.clinicaltrials.gov and see what trials Sal qualified for,” Silvia said.
Some of the treatments he received included having a virus injected into his body at the University of Minnesota, called the Seneca Valley Virus. Sal wasn’t allowed to leave Minnesota for 46 days — until the virus cleared his body — because doctors were afraid he would infect others.
“This was a phase one trial. The virus is supposed to attack the neuroblastoma, but unfortunately it didn’t work,” Silvia said. “No one expects their child to be in that 80 percent that’s not going to make it. You just have to hope that while your child is being treated, they find a cure — and that’s why we need to do research.”