Pickerington mother fighting to keep her son alive as he battles rare cancer
COLUMBUS, Ohio (WSYX/WTTE) -- A mother's love for her child is like nothing else in the world. That is certainly true for a Pickerington mother fighting to save the life of her 7-year-old son. The youngster is battling a rare form of brain cancer. His mom is now doing all she can to extend his life and save other kids in the process.
Ashley Bandavanis said she's not giving up. The family even travels back and forth to Mexico for experimental treatments. It's a fight plenty of parents can certainly understand: a mother doing everything in her power to keep her young son alive.
Deany Bandavanis, is your typical 7-year-old: full of energy, spunk and creativity. The brave, little boy is not considering how much time he has left, nor should he. Unfortunately, it's a thought crossing his mother's mind each and every day.
"At first we just told him, there's a monster, there's a monster in your head," said Ashley Bandavanis.
That monster is slowly cutting her little boy's days away.
"He knows it's brain cancer. He knows it's not a good kind," Bandavanis said.
In 2017, Deany was diagnosed with a highly aggressive childhood cancer: diffuse intrinsic pontine gliomas, known as DIPG. According to research by the Michael Mosier Defeat DIPG Foundation, only about 200 to 400 kids a year are diagnosed in the United States.
"It's in the brain stem in the pods part of the brain stem which controls all of your involuntary motor functions, like your heartbeat and your breathing and your eye movement," said Bandavanis.
Over the past year, it's been rough. There have been countless tests, exams, x-rays, and MRI's.
"You have this fear and this dark cloud over you every day, but you have to do it with a smile on your face. I think that's the hardest part of the whole thing. Is a cure on the horizon? I don't know, but these kids don't have that kind of time," said Bandavanis.
Doctors at Nationwide Children's Hospital have been part of the family's support system. Over the past year, they've spent countless hours at the hospital. Deany's mother said that Dr. Diana Osorio is the expert who diagnosed Deany. Dr. Osoria admits all doctors can usually tell parents of DIPG patients is to cherish the time they have.
"It's the worst news any parent could ever receive. We encourage these families to do these clinical trials if it is something that they feel that is possible for them and still maintain a quality of life," Dr. Osorio said.
Jenny Mosier knows the heartache families across the country are experiencing. Three years ago, Mosier lost her 6-year-old son Michael to DIPG. That loss, motivated Jenny and her husband to start the, "Michael Mosier Defeat DIPG Foundation" based in Bethesda, Maryland.
"It was a complete shock to learn that not only that our little boy had cancer, which is devastating enough just to hear the word cancer associated with your child, but also to then learn that he had a cancer in a location that where there was no possibility of removing the tumor or do any sort of operation to improve his chances of survival. When you see what DIPG does to these kids, when they're fighting in addition to ultimately typically taking their life. It's just a really, really cruel disease," said Mosier.
The foundation raises awareness and funding for research for this rare cancer. They also serve as resource for families as they look for treatment options. In a growing number of cases, that means searching outside the United States.
"We've seen this over a period of years where some international doctors are offering different types of treatment. It is understandable that families that are facing such a grim prognosis and feel that there aren't a lot of therapies here that could give a glimmer of hope for their child that they want to try to find whatever option might be available," said Mosier.
For Bandavanis, it was an option she and her family had to take. She said that she couldn't sit back and wait..
"That wasn't even a thought in my head," said Bandavanis.
Her fight to keep her son alive is taking the family back and forth across the border to Monterrey, Mexico. The treatments have been highly expensive. That money is only for the experimental treatment. Travel, lodging and food all add up.
"The treatment itself is $17,000 a month. Just trying to play the future out in your head, but also trying to come up with the money to keep him in treatment is a daily battle," said Bandavanis.
Ashley, along with friends and family hold a number of fundraisers. Spreading the message mostly on the "Deany Strong" Facebook page. Also giving an inside look into their daily struggle with messages, pictures and emotional videos. She knows her time with her son is not promised. Her focus now is pushing for more research.
"If it doesn't work for him, then at some point hopefully in my lifetime nobody will have to hear this. Nobody will have to hear this, you know. Nobody will have to buy cemetery plots and caskets, all while they're sitting right next to you," said Bandavanis.
Bandavanis said the treatments seem to be working. Deany is exceeding his survival prognosis. Ashley is taking things one day at a time. It's the family's only option for now.
"Our hope and our goal is that someday it doesn't happen anymore," said Bandavanis.
The family also said that social media has been very helpful in dealing with all of this. They're able to connect with families who are going through a similar situation. They can also share information and learn more about DIPG. The Facebook page dedicated to Deany's fight has been a great resource for telling their story and helping to raise funds for treatment.