A Pickerington couple whose 6-year-old son has been diagnosed with a rare brain tumor is weighing options for seeking treatment outside the United States while hoping for more time and a medical miracle.
Until Christmas break at Sycamore Creek Elementary School, Dean Bandavanis was living a happy and seemingly normal life alongside his classmates and at home with his 8-year-old brother, Keller.
But his situation quickly changed after a holiday visit to his grandparents' house in upstate New York, his mother, Ashley Bandavanis, said.
"My mom said, 'What's wrong with Deany's eye,' " Bandavanis said. "It looked like he had a lazy eye."
Tests showed "Deany" had perfect, 20/20 vision, but he was outfitted with glasses to strengthen the muscles behind his eye.
Then in mid-March, things took a turn for the worse when Bandavanis awakened Deany for school. His speech was slurred, and he had difficulties walking.
A trip to Nationwide Children's Hospital determined Deany had diffuse intrinsic pontine glioma, often referred to as DIPG. It is an inoperable and incurable brain tumor found in a part of the brain stem called the pons.
DIPG is an aggressive cancer that affects 200-400 children in the United States each year and affects the ability to control essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance.
"The first thing the doctor said was, 'I'm sorry,' " Bandavanis said. " 'They don't give you a guidebook for something like this.' "
Bandavanis, 33, and her husband, Dean Sr., 46, were told Deany could survive nine to 12 months, but only three if he didn't undergo radiation treatments. He's now finished 21 of his 30 treatments and is taking a steroid that has caused his face and body to swell.
His mother said it has affected his behavior, making him withdrawn and sometimes angry.
Deany's parents are trying to determine what to do next.
Few DIPG clinical trials in the United States have been conducted, Bandavanis said, in part because of relatively low levels of federal funding for child cancers and because of medical testing restrictions.
They could seek a brain surgery in New York City, but it would yield more research clues than treatment, Bandavanis said, and it likely would decrease Deany's quality of life in the time he has left.
Other options include clinical trials in Mexico or London, but those would cost $17,000 to $20,000, and the family's U.S.-based medical insurance would not cover that type of treatment.
"For myself and my husband at this particular time, we refuse to sit back and do the radiation and stop from there," Bandavanis said.
The family has received support from friends and the Pickerington community, Bandavanis said.
Max & Erma's restaurant in Pickerington, 1281 N. Hill Road, donated 10 percent of its May 9 sales to the family, and Vineyard Community Church, 15187 Palmer Road SW, Reynoldsburg, will hold a benefit spaghetti dinner for Deany from 5 to 8 p.m. June 23
A "You Caring" account to accept financial donations for Deany's treatment also has been set up at youcaring.com/ashleybandavanis-787530, and the Bandavanis family encourages people to get more information about DIPG and fighting the disease at defeatdipg.org/dipg-facts/overview/what-is-dipg/.
"We need help to get him the treatment I feel he needs," Bandavanis said. "I believe everybody deserves a chance, especially a child."
The Sycamore Creek Elementary School community has been offering assistance, as well.
Students and staff there plan to hold a walk Friday, May 12, to raise awareness about DIPG, and to collect donations for the Bandavanis family.
Deany goes to school about two hours a week because socialization and routine help, Bandavanis said.
He also receives about five hours of instruction a week at home from his classroom teacher, Lisa Tinsley, so that he'll be able to move on to first grade if treatments provide more time.
"Learning that (Deany) was diagnosed with an inoperable brain tumor was certainly unexpected and incredibly sad," Tinsley said. "In fact, never in my 16 years of teaching have I had a child that has been diagnosed with such a vicious disease.
"To be honest, no amount of education or teaching experience can prepare you to learn that one of your students will die," Tinsley said. "I truly believe, however, if there is one child in this world that could beat this disease, it is Deany.
"He shows us each day how strong and determined he is to fight and surpass any obstacles put in his path," Tinsley said.
At home, Bandavanis said, she and her husband have tried to keep life upbeat, snapping photos and trying to bring as much joy as possible to both of their sons' lives.
She said Deany doesn't fully understand his condition, and it's been difficult to discuss the situation with her elder son.
"Keller knows it's cancer, and he knows Deany is probably not going to be here when he grows up," she said.
So, while the family tries to show a brave face, the next step will be ongoing treatment.
It's a decision they wrestle with every day.
"If it's the path we choose to go outside the country, this is going to be an ongoing thing and we're going to need help for the foreseeable future," Bandavanis said. "But I also want families to know about this so they can be proactive.
"At the end of the day, if it doesn't work for him, I want him to have a hand in research, in helping someone else," Bandavanis said.