CARIBOU, Maine (NEWS CENTER) -- Zach Gagnon was a 13-year-old boy who seemed at his happiest behind the wheel of an ATV, but over the last several months he spent a lot of time, driving hundreds of miles each week to hospitals for treatment for Ewing Sarcoma, a childhood cancer that Zach had already fought once before.
The journey from their Home in Caribou to Cancer Care in Brewer was about 175 miles. That was the closest pediatric oncology treatment center to where they lived. When we first met them in May they were dreading the treatments but hopeful they would save Zach's life.
"Chemotherapy is the most traumatic thing for parents to witness their child going through you cannot describe it in words it's indescribable pain worry here anxiety feelings of helplessness you're at the mercy of the oncology world," explained Zach's mom, Peggy Michaud.
Because Zach's second diagnosis was so grim and because the chemo was taking a toll on him, Peggy also put Zach into alternative treatments to lessen the symptoms from the chemotherapy and perhaps slow the cancer They hit the road again, visiting Dr. Sean McCloy in Portland 300 miles from home where Zach received intravenous injections of high dose vitamin c.
"It gives me a more positive outlook instead of thinking oh I'm going to be sick today it's more like oh I'm going to have more energy today and be able to go walking or going to eat out or doing anything active," Zach told us during a treatment session in June.
The treatments and the travel did take a toll on the family budget. Peggy is a single mother who had to take leave from work to care for Zach. The nights in hotel rooms and eating out at restaurants added up. And Insurance wouldn't cover the high dose vitamin c injections because it isn't approved as a cancer treatment. Dr. McCloy says the problem is there isn't enough funding and research.
What has to happen we need more research we need more answers this is one of the main problems in many areas of complementary alternative medicine integrative medicine we have a lot of questions to answer and not a lot of research dollars to find those answers
The National Cancer Institute gets about $5 billion dollars each year to fund cancer research. Breast cancer gets the largest chunk of that money at about $555 million. Childhood cancers get about $185 million.
According to Dr. Stanley Chaleff, a physician at Maine Children's Cancer Program, It comes down to numbers
"To put this in a different perspective in the US approximately 250,000 women, unfortunately, are diagnosed with breast cancer a year and only about 12,000 to 13,000 children here are diagnosed with all the types of cancers,"
There have been some big strides made over the years. According to the National Cancer Institute the mortality rate from childhood cancers has dropped by half, but still roughly 1 in 5 children will die from childhood cancers.
For Peggy Michaud, that's simply not good enough, especially when it's not just a statistic but your child.
"Why am doing what I'm doing is the educate people that there are loopholes in the system there's not enough research and funding for pediatric cancer," she said.
And what makes it more upsetting for Peggy is despite all her efforts, Zach failed to get better. The vitamin c treatments didn't work and neither did the chemotherapy. In July doctors took him off chemotherapy because his body couldn't take it anymore.
"A little bit of everything pain and I feel so so each day like today I was able to get out a little bit and get fresh air and then come back in the rest," Zach told us in when we talked to him in early October.
By then, Zach needed oxygen, was on pain medication, and tumors were growing in his increasingly frail body.
"My son asked me the other day he said what are we going to do Ma? What are we going to do to save me... And it broke my heart because I have done everything I have done everything a mother could think of and we have a system in place that is not curative this is torture this is more than torture watching your son before your eyes slowly withering away cancer has taken everything from us," Peggy said as she fought back tears.
Zach lost his battle with Cancer on October 22nd. He fought till the very end.
Zach was laid to rest Thursday at a funeral service in Caribou surrounded by family and friends.
His mother is encouraging people to donate to childhood cancer research to come up with better treatments.
There are a number of organizations raising money for childhood cancer research.
The National Pediatric Cancer Foundation is one that rates high on consumer websites.
There's also some good information about childhood cancer on the National Cancer Institute's Website.