In 2021, the McElroy family lost their 9-year-old son Kyler to a pediatric brain cancer called diffuse intrinsic pontine glioma, or DIPG. His mom Kristen McElroy said she wants to tell her son’s story to raise awareness of the disease and help fund research in hopes of finding a cure.
“499 Days”
McElroy worked with Kyler’s uncle, film producer Jamie Buckner, to create the documentary. The two started working on the film after Kyler was diagnosed with DIPG.
“[Kyler] knew from early on that we wanted to do this,” McElroy said. “And I never told him what the end result would be, because I knew that it would be devastating for him. So we just said, ‘We're doing this documentary about your monster.’ That's what we called his brain tumor.”
McElroy, Buckner and the rest of Kyler’s family continued making the film after Kyler’s death.
“Four hundred and ninety-nine days is exactly the amount of time we had with him, from the day of the diagnosis to the day that we lost him,” Buckner said.
McElroy said this time of year is difficult for her.
“This is around the time when he was diagnosed. It was October 19 when we went to the hospital,” she said.
Kyler’s diagnosis stemmed from chronic headaches, McElroy said. She said her son had headaches for about a week before she took him to the doctor.
“So I made a doctor’s appointment with his pediatrician, and said, ‘Can you please check him out?’ She said he didn't look like his face was [symmetrical] on both sides, and I just thought that's the way he looked for a while. And so we kept an eye on it,” McElroy said. “We thought it was getting better, but his personality was changing, his balance was changing, everything was changing.”
Shortly after, McElroy took Kyler to the hospital, fearing that something serious was wrong with her son.
“They did a CT scan and said he had bleeding on the brain and a mass,” McElroy said. “And the diagnosis happened the very next day at the hospital. They diagnosed him with DIPG.”
DIPG is a brain tumor that grows on parts of the brainstem called the pons, which is responsible for bodily functions like balance, breathing, sleeping and bladder control.
“From there, it was just so hard,” McElroy said, “because it was this beautiful child that was so full of life and just a sweet kid [who] wanted to start a tree planting club at school with his friends to help with more oxygen in the world. And I am constantly just devastated that I don't get to see him grow up and get to be a part of his journey of life, because DIPG took that.”
A film for awareness, funding and research
Research shows DIPG is one of the most common brainstem tumors in children. Between 200 to 300 new cases appear in the United States every year, according to the National Institutes of Health. Most kids with DIPG survive for less than a year after their diagnosis.
Despite how common DIPG is among children, McElroy said she and her family had no idea what it was.
“When my son was diagnosed, I felt so very alone in his diagnosis. I didn't have a bunch of resources…I was given a book at the hospital with some other families’ stories,” she said.
McElroy said she wanted to make the documentary to build community with families who may have a child diagnosed with DIPG or any other pediatric brain cancer.
“Something that is more important than anything I have in life right now is to make sure that somebody else doesn't go through it and feel alone and that they have sort of something that they can grab onto and be able to have as a resource for them and to share Kyler story, so that Kyler, even though he can't live with me, he can live forever in this documentary,” McElroy said.
Buckner said he wants “499 Days” to call attention to research for DIPG, a disease that has a 2% survival rate.
“I think it's actually a little crazy. Even people in the medical community, a lot of people have not heard of DIPG,” Buckner said. “But I think most people, the first time they hear the term DIPG is when they're being told that their child has it, and we can't have that.”
He said that’s why the family is trying to make a difference.
Buckner and the McElroy family are raising money for cancer research and the film’s post-production process on the film’s website, Buckner said.
On the site, people can donate money to the campaign or share the fundraiser on social media. With money from the fundraiser, Buckner said he will be able to screen the film at festivals and with organizations dedicated to cancer research.
“Things like DIPG, over the years, people have essentially … [said], ‘I don't know that there's anything we can do about this.’ And then we're not doing anything about it because there's no funding. And there's no funding because you can't do anything about it,” Buckner said.
The family is trying to break that cycle by raising awareness through the film.
“Our goal with the movie is, you know, anyone who's ever heard the words ‘leukemia,’ ‘lymphoma,’ ‘brain cancer,’ will know those four letters as well. They'll know DIPG,” he said.
