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.”
“Pediatric cancer is so underfunded — they take all these drugs that they use on adult cancers and use them on kids, and it’s so different,” Steven Vanni said.
When Sal was at the oncologist, Silvia Vanni said she was told by nurses to pray he had leukemia, because children with that disease have a 70 percent survival rate, according to Dr. Danny Armstrong, chairman and president of the American Cancer Society’s Florida Division Board.
Armstrong agreed that pediatric cancer is underfunded when compared to adult cancer, due in part to the number of children each year who contract the disease in comparison to adults.
“In the U.S. and Canada, there are about 12,000 to 13,000 children diagnosed with cancer each year,” he said. “So the bulk of the dollars really flow to adults who have breast cancer, prostate cancer, lung cancer and colon cancer.
“The big four.”
Since their son died, the Vannis have founded a non-profit called the Mystic Force Foundation, named after their son’s favorite superhero, the blue Power Ranger. Mystic Force raises money to fund research. Since 2008, they’ve raised approximately $500,000, according to Silvia Vanni.
Steven Vanni set up a lab at the University of Miami that is funded by Mystic Force and employs Dr. Regina Graham, who has a Ph.D. in molecular and cellular biology.
“It’s not going to do us any good, but maybe it can help someone else,” Steven Vanni said.
Sal’s tumor cells are being grown at the lab today. The cells are resistant to many cancer treatments, so doctors and researchers think if they can figure out Sal’s cells, they may be able to help other children with variations of neuroblastoma.
“What we’d like to do is identify what’s in Sal’s tumor that makes it so aggressive,” De Angulo said.
Graham explained that chemotherapy is often so toxic, that, “even if they survive childhood cancer, there’s a good chance they’re going to get a secondary cancer [down the road], just from all the chemo.”
“The best therapy would be one that causes cancer cell death but spares the normal cells,” Graham said.
Sal’s disease disrupted his entire family’s life. His mother spent 18 months in New York, where Sal was treated at Sloan-Kettering. His father traveled most weekends to be with him. His four brothers and sisters — ages 6 to 16 at the time — were taken care of by Silvia Vanni’s sister, Maggie. When Maggie traveled with her, Steven’s sister Ellen would take on the role.
“My oldest was going to FIU, but when everything happened with Sal, he failed a lot of his classes and he had to start all over again at Miami Dade,” Silvia Vanni said.
“From the day you’re diagnosed, your clock is ticking. You have to figure out something fast – and we ran out of time – like most of these parents,” Steven Vanni said.
That’s why they’ve made it their mission to help find a cure for childhood cancer. “I still sleep with his favorite teddy bear,” Silvia said. “His room remains untouched – Sergio, now 11, (his brother) makes sure of that.”
Sergio and Sal were the closest in age to each other – two years apart. Sergio said when he found out his little brother, the youngest of the Vanni children, was going to die, he tried not to believe it. “I kept crying,” he said, “hoping it wouldn’t happen.”
Sal’s toy cars are stored beneath the staircase in the Vannis’ home. Next to his ashes sits a Build a Bear that Sal made for his father. It’s dressed like a doctor in scrubs with a surgeon’s mask, and when you press his belly, Sal’s voice says, “Daddy, I love you. I hope you like your bear.”
Sal never knew he had cancer, he never knew he might die. He knew he had neuroblastoma, and if one treatment didn’t work, they would try something else, his father said.
Sal was mostly in great spirits and liked to sing and dance. “His very favorite person in life was Pitbull — the rapper,” Silvia said. “I’m sure if he’d made it, he would have grown up to be just like him.”
“When he would go to the hospital, he would pick the prettiest nurse and say, ‘I want her to care for me,’” Steven Vanni said.
But they knew the war was over when Sal said, “I’m in so much pain I need a new body.”
Those were his last words.