Brain tumor from ‘Buddy’ Miller yields scientific clues that may save lives

Published: Oct. 17, 2019 at 7:40 PM EDT
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(10/17/2019) - Looking around the Miller's home in the year since Buddy passed, he's noticeably absent, but his spirit is not.

"We love that face and we miss that face and until we see that face again, we want to see it as much as we possibly can," Buddy's Dad, Brad Miller said.

He sat down with me in February 2017 to share the horrific diagnosis.

"We told 'em he's got monsters in his head that we need to get out and he's willing to do whatever it takes," Miller said.

The brain tumor, known as DIPG, was latched onto his brain stem; and, there was no safe way to remove it.

Brad and Jeni Miller were given 6 to 9 months with their then-7-year-old son.

"It's the most miserable experience any parent could go through or a child or anybody in a family, to know something's in somebody you love that there's nothing anybody can do to fix it," Miller said.

"We have one proven therapy and that's radiation," explained Dr. Carl Koschmann.

He is a pediatric neuro-oncologist at C.S. Mott Children's Hospital in Ann Arbor. Dr. Koschmann took care of Buddy during his 21-month fight against those monsters in his head.

"Buddy was wise beyond his age," he said. "I mean, he had a sense of humor that was right up there with adults. And so, you know, you'd think he wouldn't be paying attention and then he would crack some joke that you'd be like, well that's hilarious; and you know, just a really sweet kid."

"And the last time he saw Buddy I think he knew more than we did, obviously; and, it was like 7 days before Buddy went to Heaven, we were at U of M and he gave him a hug," Miller said. "And Jeni and I were talking, we heard crying, we thought it was Buddy and it was Dr. K as he was saying goodbye to Buddy."

As Buddy's family says it, the 9-year-old won his fight on October 19th, 2018.

"We know he's' healed, he's healthy and he's waiting for us. The ones who lose are us because we're here without Buddy and the love that he brought us," Miller said.

Buddy's tumor was removed just a few days after he passed and given to Dr. Koschmann to push forward in his efforts to find a cure

"We know how it looked when we biopsied it at the beginning, how did it change over time," Dr. Koschmann explained. "And then, we also take cells and immediately put them into culture and grow them and continue to learn from the cells that -- Buddy's tumor cells are still growing in our incubators."

Some of those cells have also been sent to a lab in Germany.

Dr. Koschmann said they've already learned a lot because Buddy's tumor has mutations in two genes commonly found in DIPG.

One of those is called PDGFRA, which he said has responded well to a drug for leukemia. Their struggle has been how to get that drug into the brain.

"And before we had Buddy's cells, we didn't have samples from a patient with DIPG with that alteration to be able to model," Dr. Koschmann explained. "And so, what we'd like to do is what we've learned from his tumor, to really bring that back to the clinic for the next patients who have that PDGFRA alteration."

Hope for healing and an eventual cure.

"Brad and Jennifer made the ultimate contribution towards research," Buddy's Grandpa, Patrick McDonald said.

He helps run the nonprofit, Team Buddy Forever Foundation. They raise funds for research and to provide financial help for other DIPG families in his grandson's honor.

"At some point, when a child is diagnosed with DIPG, the doctor will be able to say this is exactly what you will do. This is the comprehensive care path plan that's now available in the U.S. and that's our longterm goal," McDonald explained.

It's the unthinkable sacrifice from their family and many others helping doctors get there.

"We want a cure fast and we're gonna give, you know, whatever we can to help do that," Miller said.

Dr. Koschmann's research will be published in papers and shared across the world. He said because so little has been done, researchers are very well connected as they work for a cure.

According to the National Pediatric Cancer Foundation, pediatric cancer only receives 4% of the federal government's research funding. DIPG gets only 1% of that.

To learn other ways the Team Buddy Forever Foundation is supporting families dealing with the fight they know all too well, click on the 'Related Links' section of this story.