Vincent James "Vinny" Speziale was acting like a typical 3-year-old on a recent weekend night, giggling and zooming around the living room of his family's Seattle home as he played with toy cars and tried his hand at video games.
But it wasn't that long ago that Vinny was fighting for his life at Children's Hospital & Regional Medical Center, a victim of neuroblastoma, a relatively rare form of cancer that strikes only around 600 to 700 young children a year. Vinny underwent about a year and a half's worth of treatment at the Sand Point hospital, said his mother, Traci.
The recently concluded treatment regimen included chemotherapy, radiation therapy, an operation and a stem-cell transplant, she said.
Traci and her husband, Vince, have their fingers crossed, but it looks like the treatment has worked. "We refer to it as 'no evidence of disease,'" Traci said of Vinny's recovery.
Finding treatment
According to the National Cancer Institute: "Neuroblastoma is a solid cancerous tumor that begins in nerve tissue in the neck, chest, abdomen or pelvis, but usually originates in the abdomen in the tissues of the adrenal gland."
The cancer has usually spread by the time it is detected, according to the National Cancer Institute, and the disease isn't easy to detect, Traci said.
"We went to our clinic a number of times; I would say six or seven. We also went to Children's Hospital one time, to the E.R.," she said. "All the time, they thought it was constipation."
It wasn't. An initial x-ray showed nothing, but an ultrasound exam at a later visit to Children's Hospital revealed that Vinny had a tumor growing between his kidneys and liver, Traci said.
"He not only had the tumor, it had spread to his bones, the back of his skull and around his eyes," she said. "So we had a very serious case."
Vinny immediately underwent intense chemotherapy under a clinical trial, which shrunk the tumor, Traci said.
The tumor was then surgically removed, followed by another round of chemotherapy, radiation treatment and a stem-cell-transplant using cells taken from Vinny before the treatment began, she said.
The treatment was rough on the child. "He stopped talking," Traci said of one example.
"At times, he was reaching up into the sky," added Vinny's grandmother, Jeanne Congdon.
Congdon and Traci panicked when that happened because, Congdon said, she had seen her mother do the same thing and call for her father shortly before she died.
"We were both saying, 'Don't go, Vinny. Don't go,' " Congdon recalled.
Vinny stayed, and he bucked some tough odds by surviving, according to Dr. Julie Park a pediatric oncologist specializing in neuroblastoma at Children's Hospital.
"In general, infants [younger than 1] do quite well, with three-quarters to 100 percent surviving," she said.
For children diagnosed when they are older than 1, such as Vinny, only about a third survive, especially when the cancer has spread to the bone marrow, Park said.
Internet support
Parents of children suffering from the disease have established an Internet presence, something the Spez-iales have also done. There are 350 parents in the Internet group, Traci said.
"I'm pretty obsessed with it," she said. "I read it every day. I know these kids."
Parents like the Speziales share developments in their children's cases, offer each other support, and grieve together when a child dies, according to the postings.
"We've lost 10 kids on that listserve since August," Traci said, sighing.
Her husband, Vince, isn't fond of logging onto the listserve. "Personally, I don't want to. I've got enough to put up with here," Vince said, as he looked over at Vinny.
One member of the Internet support group in Fort Worth, Texas, has gone beyond sharing experiences and offering support to other parents with children suffering from neuroblastoma. Mark Dungan has a daughter named Sydney, who is suffering from the disease, and he launched a nationwide fund-raising effort on Oct. 1.
The Lunch for Life campaign urged people to donate $5 to help finance research that could lead to a cure for the disease.
The amount is about the same as what people spend on lunch, figured Dungan, who urged each donor to contact five friends and ask them to donate $5.
Each of those five friends, in turn, were enouraged to contact five friends apiece and ask them to donate $5, and so on, until $10 million was raised.
The fund-raising campaign was originally scheduled to last for 10 days, but it has been extended because only $60,000 was raised, according to Dungan's latest Internet posting.
Donations can be made on-line to the nonprofit Children's Neuroblastoma Cancer Foundation (CNCF), at www.cncf-childcancer.org, or by mail to CNCF, at P.O. Box 6635, Bloomington, IL 60108. Donations are tax-deductible.
Prayers for Vinny
Vince, Traci and Congdon credit the North Queen Anne Day Care for supporting them since Vinny got sick. Both Vinny and his brother were attending the day care connected to the First Free Methodist Church when Vinny was diagnosed with neuroblastoma, Congdon said.
A parent at the day care helped the family set up their own website, at www.prayingforvinny.org, she added, and the website has a schedule people can sign up on to pray for the child.
Lois Overholt, director of the day care, said the First Free Methodist Church doesn't have a prayer schedule for Vinny, but that doesn't mean the day care and the church congregation haven't done their part.
"I know he was on a prayer list for [day care] staff," she said.
The church also has a prayer chain that included the child, Overholt added: "Vinny was prayed for several times."
Vinny's day-care teacher, Negist Geberesadik, said she prays for the boy day and night.
Originally from Ethiopia, Geberesadik was one of the first people to notice that something was wrong with Vinny, she said.
Congdon said that the Philadelphia Church in Ballard also took part in the prayer circles for her grandson, and Overholt and Geberesadik have no doubt that prayer made a difference in the child's case.
"I just think it's a miracle," Overholt said of Vinny's recovery.
Geberesadik agrees. "I believe God answered our prayers," she said.
Both Traci and Vince said they are grateful for all the prayers, but the couple is taking things one day at a time.
"The biggest fear is a relapse," Traci said of a development that means Vinny would have only a 17 percent chance of survival. "That's the hardest part."
