GARDINER, Maine (NEWS CENTER) -- When a child becomes seriously ill, it can be crushing emotionally for the parents to see their child sick or in pain. It is also crushing financially, with cancer treatments equally about half a million dollars for a child. A New York Times op-ed said that "the typical new cancer drug coming on the market a decade ago cost $4,500 per month (in 2012 dollars); since 2010 the median price has been around $10,000."
These prices are familiar for the Wares, a busy blended family. The day after Hillary and Scott got married in 2012, they received life changing news. Their son, 14-year-old Brandon, had a brain tumor.
"Right from one of the highest points in my life to one of the lowest in the snap of your fingers," said Scott.
Brandon was born with a condition known as Neurofibromitosis, or NF. NF causes tumors to grow along various types of nerves in the body. The tumors are almost always benign and rarely cause any pain or discomfort. They also rarely occur in the brain. Brandon had been experiencing double vision, which is what led to the doctor's visits and diagnosis. Doctors told the Wares that Brandon is among just three percent of NF patients to develop a brain tumor. Though the tumor was benign, doctors determined he would need surgery right away in Boston, hoping to remove all of the tumor.
"They only ended up getting 95 percent of the tumor, so the other five percent was left, which we didn't expect. But it was right on his brain stem so they couldn't touch it without hurting him," said Scott.
That meant Brandon would need to undergo 64 chemotherapy treatments to get rid of the rest of the tumor. That meant 64 trips from their home in Gardiner to the treatment center in Scarborough, about a 55 mile trip each way.
Besides the costs for hospital stays and expensive drugs, the travel expenses can become quite expensive, especially in a rural state like Maine. The Paul O'Neil Foundation realized the need to help families with travel expenses. They reimburse families with children fighting life threatening illnesses for gas, food and lodging associated with their child's medical care. Along with each reimbursement check comes a handwritten note of care and encouragement from co-founder Julia O'Neil.
"It's just the one thing you don't think of. You go to Boston, you have to eat, you need to sleep, you have to put gas in your car. And it adds up. And you don't think of it. But they thought of it, and it's huge," said Hillary.
It's given Scott and Hillary more time to focus on Brandon who, they say has been a rock through this entire ordeal. He is still dreaming of his future, even with such a difficult present.
"I want to be a musician, or do something with movies when I'm older," said Brandon.
Brandon is only about halfway through his chemotherapy treatments. While Brandon and his family know they have a long path ahead of them, the Paul O'Neil foundation will continue to support them and countless other families.
See our interview segment with the Paul O'Neill Foundation: Foundation helps with sick kids' treatment travel costs