Luke’s cancer battle sparked his family to campaign in Washington, D.C., to help other families going through the same thing they did.
CHARLOTTE, N.C. — A Charlotte family whose son was diagnosed with cancer at just 3 years old is getting ready to go back to Washington, D.C. to once again fight for pediatric cancer funding.
They did the same thing in 2024, only to see Congress cut the much-needed money in December. According to the National Cancer Institute, only 4% of all government-allocated cancer research funds go toward pediatric cancer research.
Brent Miller remembers the moment they learned his then-3-year-old son had cancer.
“It hits you like a ton of bricks,” Brent Miller recalled.
“Your world just crumbles, and you’re not sure what to do,” his mom Megan Miller said.
His son Luke Miller knows the basics behind his diagnosis.
“I got sick,” he told WCNC Charlotte in the family’s living room.
Despite his young age, Luke knew exactly what to do when his parents, visibly upset from the news, broke down after hearing the news.
“The first thing Luke did, he brought Megan, my wife, a Band-Aid,” Brent Miller recalled. “We knew from that point on he was going to be a fighter.”
“It affected his entire system when he got the diagnosis,” Megan Miller shared. “He was at Stage 4, pretty much the worst you can get.”
“You have these moments when you’re going through stuff, and you’re like, ‘He’s 3, he shouldn’t have to be going through this at all,’” Brent Miller added.
Luke went through three long years of a grueling, special treatment protocol aimed at getting rid of his cancer.
“Watching him fight for his life and being so young, I saw that fight in him,” Megan Miller said. “Watching him fight, we started taking note and seeing that I had a voice, and he had a voice. I was like, ‘If he’s gonna fight, why can’t we fight with him?,”
First, she wrote a children’s book based on Luke’s cancer journey called “Luke and the Lost Bell.”
“Our goal is to get these books in hands of cancer patients and their families across the country,” Megan Miller explained.
Then, in February 2024, the whole family went to D.C. to fight for pediatric cancer research funding.
“We’re still using drugs on children that are made for adults, which is why were seeing all the side effects,” Megan Miller explained. “It’s because were treating them with adult drugs. There are very few drugs made for children.”
At the time, it seemed like a slam dunk with vocal, bipartisan support.
But then in December 2024, with a government shutdown looming and then President-elect Donald Trump poised to take office, legislators scrambled to get a spending package passed, slashing the funding they had been campaigning for.
According to the Pediatric Cancer Research Foundation, the Gabriella Miller Kids First Research Act 2.0 was ultimately revised and passed as its own standalone bill. That will offer a $12.6 million annual allocation for childhood cancer for five years.
However, the other programs that remain in limbo are:
- The Gabriella Miller Kids First Research Act 2.0., which would have extended the National Institutes of Health’s Gabriella Miller Kids First Research Program.
- The Accelerating Kids to Research Act, which would have made it easier for children from low-income families on Medicaid to receive specialized cancer treatment across state lines.
- The Creating Hope Reauthorization Act, which would have extended a program incentivizing pediatric drug development that has already resulted in the development of 65 new medications.
- The Give Kids a Chance Act, which would have allowed children with relapsed cancers to undergo treatments combining cancer drugs with other therapies.
“We are going back,” Megan Miller said. “We had six bills that did not get passed as part of the budget cut, so we want to see what their stance is on the reactivation of these.”
This time, they will go back with a renewed sense of purpose and hope.
Luke is now cancer free, in kindergarten and about to start basketball season.
“He’s living a normal life right now,” Brent Miller said.
If you would like to continue driving pediatric cancer research forward, you can consider becoming a donor for the Pediatric Cancer Research Foundation. The foundation also urges anyone concerned about the lack of federal funding available to take an active role in advocating for change. They suggest contacting your state representatives to let them know how crucial federal funding is for fueling innovation in pediatric cancer research.
Contact Michelle Boudin at mboudin@wcnc.com and follow her on Facebook, X and Instagram.
