ITHACA, N.Y. – An Ithaca native has returned to her hometown to help raise money for a fight against her six-year-old son’s inoperable brain tumor.
Ashley Gregg Bandavanis, a born and raised Ithacan, said her son Dean was diagnosed in March with a rare and aggressive cancerous brain tumor called Diffuse Intrinsic Pontine Glioma – DIPG, for short.
Bandavanis said the tumor is located in Dean’s brainstem, an area which controls involuntary motor functions – doctors are not able to penetrate the area, making the tumor inoperable.
Dean went through 30 rounds of chemotherapy radiation from when he was diagnosed in March until May 16, when doctors told the family Dean only had an expected 9 to 12 months to live.
At that time, Bandavanis said she found a special treatment for Dean’s condition at a hospital in Monterrey, Mexico.
“It’s the only treatment in the world that has shown any progress,” she said. “They want a cure and they’re just about there.”
While there are clinical trials set up in the U.S., Bandavanis said most of the trials were more focused on testing drugs than seeking longevity of the patient’s health. The treatment in Mexico, Bandavanis said, focuses on immunotherapy and intra-arterial therapy.
“We didn’t want to put him through invasive brain surgery,” she said. “Once his quality of life goes down, everything stops.”
Bandavanis said the immunotherapy treatment was key in keeping Dean in good spirits with little side-effects. Since his first treatment at the end of May, Bandavanis said that Dean is responding positively to his treatment.
“The tumor has shrunk, and after one treatment, 30 percent of the tumor has become inactive,” she said.
The tumor, doctors say, is ideal for the treatment because it is not intertwined with other tissue around the area, unlike many DIPG tumors. This makes the area easier to target.
However, since Dean is receiving therapy out of the country, his hospital visits are not covered by insurance. When Dean is scheduled for a treatment, the family flies down to Monterrey, usually for 10 days at a time. Bandavanis said that Dean is expected to go through treatment until January, and each treatment costs nearly $33 thousand dollars apiece with the immunotherapy.
“We’re not going to stop until we run out of money or the tumor is gone,” she said.
Bandavanis and her family will be hosting a fundraiser this Sunday to benefit Dean’s treatments. There will be live music by The Jeff Love Band, Mike Brindisi, Nick Gilbert and Citizen O’Kane. Food will be donated by Italian Carry Out and dessert will be donated by Dolce Delight. All the proceeds will be donated to Dean’s continued treatment and related expenses.
“He’s getting back to who he was before he was diagnosed,” Bandavanis said. “It was super important for us to be here – I don’t really have anything to offer right now, I just need to show people our appreciation.”
Join Dean and his mom at the Dock this Sunday, June 25 at 1 p.m. at The Dock, located at 415 Taughannock Blvd. Check out the Facebook event here.
Photos courtesy of Ashley Gregg Bandavanis.