Jordan Cicchesi, In Recovery, Comes Home

By Dottie Evans

David Cicchesi of Newtown called The Bee June 30 with the good news that his son, Jordan, 5, had undergone successful brain surgery June 14 at the Barrow Neurological Institute in Phoenix, Ariz., and was back home.

Jordan and his father are staying with Mr Cicchesi’ parents, Mary and Mike Piccione of Will’s Road. Jordan’s mother, Dawn Stevens, and her parents also accompanied him to Arizona.

The surgery was planned to remove a brain tumor that was causing seizures and behavior difficulties for the child, who has been diagnosed with Pallister-Hall Syndrome. By the age of 4, he had already gone through several surgeries for the removal of extra fingers and toes, as well as other tumors –– all symptoms of the disease. The decision to take him to the special Arizona clinic was necessary because of the location and nature of the tumor.

“He’s very tired, but he’s OK. He’s playing with his cars, and I take him outside for walks, though he’s still recovering,” said Mr Cicchesi.

“The operation was not what we expected. We had thought it would be open surgery but it was endoscopic, meaning they only cut a small hole and went in with a tube. They bruised a part of his brain while separating and removing the tumor, but they did get out 80 percent of it, which was what they had hoped to do,” he explained.

The best news was that Jordan has not suffered a seizure or any language difficulties since the operation, and “his spirits get better every day.”

It will be at least six months before the doctors can tell exactly what effect the tumor had been playing, and the family will be talking with their local neurologist about lowering his medication as time goes on. He must return to Arizona in a year for a follow-up exam.

The plan is for Jordan to enter kindergarten in the fall, either at Middle Gate or Sandy Hook.

Several local fundraisers were organized to help the Cicchesi family with their expenses while in Arizona. Mr Cicchesi said the most of the money from a Bridgeport fundraiser went toward the hotel and car, and the Newtown funds were used for Jordan’s food and his personal needs. He plans to use what money is left over toward future medical needs.

“Right now, Jordan just needs a break from doctors and hospitals. We might go to the St Rose Carnival, and he wants to go swimming though he can’t get his head wet. In Arizona, we would get in the pool and I would hold him stretched out in the water. Before his surgery, he was diving and swimming, but we have to take it slowly,” Mr Cicchesi said.