NEW LOTHROP (WJRT) (5/10/2018) - The Millers soak up every smiling moment they get with their little boy, Braden “Buddy” Miller.
“He wants to be a normal 9-year-old boy. He wants to run and jump and play. And right now, he can't and it's been tough to watch this,” Buddy’s father Brad Miller said.
Buddy should be sitting in a fourth-grade classroom, he should be playing his favorite sport, football. But instead, the 9-year-old has spent the last 16 months fighting for his life.
In January 2017, at just 7-years-old, Buddy fell and hit his head on the playground. He was rushed to the hospital.
After a series of tests and a helicopter ride to University of Michigan Hospital in Ann Arbor, Buddy was diagnosed with a rare, inoperable brain tumor called DIPG.
“It was not maybe, not possibly, not... It was, here's what you got, don't hope for anything else, you know, just take your time and do what you can with it,” Brad said.
Brad and Jeni Miller were given 6 to 9 months with their boy.
“After I picked myself up off the ground, literally, or he picked me up, I mean we just looked at each other and we were like no, absolutely not,” Jeni said.
“We serve a great God that I know can do more things than we'll ever understand,” Brad said.
There is no approved treatment for Buddy's form of pediatric brain cancer in the United States.
“The FDA regulates this so much, like right now there are current trials, but they start with a safety trial, which means, 'OK, we're gonna try this drug, but we're only going to give them very little to see if it works or if the child gets sick,'” Brad said of the government's position.
So the Millers began researching how to keep their son alive.
“He will ask us if he's going to be OK, if he's going to get better and every time we say yes, we'll do whatever we have to do to get you better,” Jeni said.
The Millers ended up finding an experimental treatment option in Monterrey, Mexico, in early 2017. Now, 16 months later, it's helped their son push past the life sentence he was given.
“They take a catheter and they run that catheter all the way through his groin up through his spine and into the tumor itself,” Brad said. “Then, this medicine will follow it up and then they use 10 to 12 different types of medicines.”
The Millers have traveled to Mexico 10 times for the intra-arterial and immunotherapy treatments.
In March, Buddy’s latest scan showed just a small green dot of a tumor left, giving him a score of 2.7. A score of 2.0 is no evidence of disease.
But, the latest trip two weeks ago, showed the tumor has started growing again.
As if the stress of trying to save their child's life isn't enough, the financial cost of each treatment is between $17,000 to $30,000 -- and it all has to be paid out of pocket.
“It boils down to a dollar bill of whether we have him with us or not,” Jeni said.
Family, friends and the entire Flushing and New Lothrop communities quickly stepped up. They have frequently held fundraisers for Buddy, whether it's a bowling night, an auction or a restaurant giving away some of their proceeds for the day.
“They have single-handedly helped us raise hundreds of thousands of dollars and without them, we wouldn't be anywhere near where we're at. And I can't say thank you enough,” Brad said.
According to the National Pediatric Cancer Foundation, pediatric cancer only receives 4 percent of the federal government's cancer research funding. Jeni said DIPG gets about 1 percent of that.
“So instead, we just lose you know 300 to 400 children a year due to this disease,” she said.
That's where Jeni's Dad buddy's grandfather, Patrick McDonald, comes in.
“This is kind of my new job. So, I spend some times during the week, you know, making calls to people and trying to develop that advocacy. That's what has to happen,” McDonald said.
Right now, he said the majority of funding is coming from family foundations who have lost their children to DIPG. McDonald is working to change that.
“There's a point where the federal government and the medical industry have to step up and put a full court press on research for DIPG patients,” McDonald said.
To get the ball rolling, he’s lobbying local lawmakers in Lansing.
Gov. Rick Snyder has named May 17 “DIPG Awareness Day in Michigan.” To mark the day, Buddy's family will be going to the State Capitol in Lansing.
So far, with the help of Genesee County Clerk John Gleason, they have plans to meet with two representatives and a senator.
“You need a celebrity. You know, Pope John Paul II and Michael J. Fox elevated the discussion in funding for Parkinson's. Lloyd Carr's grandson died of this same disease a few years ago and that elevated the discussion,” he explained. “It's almost disgraceful when you figure you need renowned individual to suffer from this or other issues to bring light to the issue and funding.”
The Millers will be asking lawmakers for DIPG to become a vanity license plate option. Plus, McDonald said some states allow people to make a contribution to the research when you renew your plate or file your income tax.
“It's a bear to wrestle. And without funding, there won't be change. And again, if we do have that funding available, there are agencies that would project manage that process and just bring a different level of care to help these children,” McDonald said.
That care wouldn't force children like Buddy to travel out of the United States every three or four weeks and would give hope to the 200 to 400 children who are expected to be diagnosed with DIPG every year.
“We do our best and stay positive and stay firm in our faith that he will be OK. He will be a spokesperson,” Jeni said. “This is not going to go away. The only thing we can do is work to find something to help it, cure it, treat it effectively here in the United States hopefully -- and we are committed.”
While the fight continues for more funding, there is hope from federal lawmakers.
President Trump is an avid supporter of "right-to-try" legislation. In March, the House passed a bill in favor of experimental treatment in the U.S. It's now up to the U.S. Senate.