MOON TOWNSHIP (KDKA) — A year ago Connor Patsilevas was a typical second grader looking forward to baseball season. Then, came the diagnosis of a rare form of brain cancer called DIPG.
Chris Patsilevas says his son was given only six months to live and so far has beaten the odds, “Pittsburgh has had three of them this year, two are already gone.”
DIPG is a cancerous tumor in the brain stem. In Connor’s case, it was about the size of a quarter when it was discovered. It is now almost the size of a racquetball. It increased his incapacity as it grew.
“He can’t walk, he can’t talk, he can’t eat, he can’t swallow,” Chris says. “The sad thing about this, he’s aware of everything. It doesn’t take away his reasoning, he’s aware of what’s going on. We’re down to like weeks now. It’s not months anymore. His birthday is in September. If we don’t do this, he won’t see it.”
There is an experimental medical procedure, which has seen some success in England. There, it was used on a young girl and Chris said her results are hopeful.
“She’s now up and walking, and talking, and the tumor has shrunk by 50 percent,” Chris said.
But, the doctor in England can only take a few patients and Connor will not be making that trip.
Chris and his wife, Alyson, kept looking and have found specialists in San Francisco willing to do the procedure.
It involves inserting four catheters directly into the tumor and flooding it with Panobinostat. It’s a powerful and very expensive drug and it has not been approved in the United States for this purpose.
But, the Patsilevas family has not let down their drive to get Connor the treatment.
“We got the doctor, the hospital, we’ve got the surgeon, we’ve got the drug, now it’s just getting the money and the FDA approval for a one-time compassionate use,” Chris said.
The FDA approval could come any day, but the money is another issue. The Patsilevas family estimate the cost of the trip and procedure in California at about $200,000. The majority of that cost is for the Panobinostat.
Raising the money is a daunting task and comes at a time when the family is dealing with a second health crisis. Alyson Patsilevas is battling triple-negative breast cancer, which Chris describes as the worst kind. The chemotherapy has left her bones brittle and she recently fell on a carpeted floor, shattered her elbow and broke her arm.
She was undergoing surgery Monday to repair the arm even as Chris was taking care of Connor and trying to raise funds. Connor’s sister, Alexis, has also been a part of the team. Together, the family set up a GoFundMe account for Connor. There is also a fund set up at PNC Bank and donations can be made at any branch. “Connor John Patsilevas Plan” is the designation for the account.
So far, the family has been able to raise about $40,000, but it’s a race against Connor’s life clock.
“I’m not going to lose him because of money, I’m just not,” Chris said, choking back tears.
Chris Patsilevas joined the “KDKA Morning News” with Larry Richert and John Shumway to talk about Connor’s battle and how they are doing everything to get him treatment before it’s too late.
“Now, it’s just fighting time right now [to save Connor],” said Patsilevas.