Kyler Bradley’s memory fuels work to find cure for DIPG

All Kyler Bradley wanted to do was be a 10-year-old boy.

Play basketball, ride his bike around his Fairfield Twp. neighborhood, ride ATVs — especially in the mud — and wrestle with his big brother.

He also wanted to be famous.

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Most of those childhood ambitions stopped Oct. 16, 2015, the day Kyler was diagnosed with diffuse intrinsic pontine glioma, a childhood cancer better known by its initials, DIPG.

That’s also the day his parents, Anthony Kirk and Rebecca, began to try to fit 80 years of life into six months.

From that point on, the Bradleys worked to grant all of Kyler’s wishes until he died April 12, 2016. Wednesday marks his one-year “angel-versary.”

“We were true advocates for Kyler,” Rebecca said.

That also meant being honest with their son, though the doctors wanted the Bradleys to tell Kyler “that he just had a tumor.” But before they left the hospital, Anthony Kirk and Rebecca said he needed to know.

“He asked us if he was going to die and we said, ‘Yes,’” Rebecca said. “He needed to get the affairs in order in his head and he needed to figure out his life. We weren’t going to take away any of his days because we knew the survival rate. There’s none. There’s zero.”

Anthony Kirk said being honest with Kyler from the start “was his inspiration to fight. I told him he had to fight no matter what.”

That’s when their already close family became closer, contrary to the doctors’ warnings that DIPG has torn families apart. And from that moment, a 10-year-old boy, a fifth-grader at Fairfield Intermediate, thought about his death and wanted to fight for a cure.

Rebecca recalled while in the hospital those first couple nights Kyler saying, “I want to come home,” and, “Little kids should not be left alone in a forest.”

She didn’t know what Kyler meant by that so she said he repeated it: “He said, ‘Yeah, I can’t be left alone in a forest in the dark.”

That meant he didn’t want to be buried, she said. They had Kyler creammated and his temporary urn — a black leather box with two crosses connected by necklace chains — remains in his bedroom, a room filled with memories of his childhood and how he became famous.

Every night, the Bradleys say, “Goodnight” to their sons, Kirk and Kyler.

Community support

Kyler’s inspiration reached beyond his parents’ home.

The community first met Kyler less than two weeks after his diagnosis. He could barely talk and was in a wheelchair as the right side of his body was paralized. That’s when at a Fairfield Twp. Trustee meeting the boy was made a fire chief for the day, complete with a ride in a police car and a fire engine escort from his home on Stockbridge Lane to the township administration offices on Morris Road.

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Kyler was adopted by the township’s firefighters, said Chief Timothy Thomas.

“We try to do the right thing,” he said. “We tried to make the best of a bad situation.”

Thomas said Kyler taught him and the firefighters life lessons. They’re in the business to save lives, but sometimes the result is out of their control, he said.

“Our jobs is to make it better. That’s what we’re trained to do. Sometimes we can’t fix the problem,” Thomas said.

He paused, then added: “It was a painful lesson for everybody to learn.”

One year later, Thomas often thinks about the young boy and the impact he had throughout Butler County. He hopes that one day, maybe because of the attention Kyler brought to the “terrible disease,” a cure may be found.

DIPG is rare. Between 200 to 400 children are diagnosed with DIPG every year, typically between 4 and 11 years old.

Brain stem tumors, like DIPG, account for 10 to 15 percent of all brain tumors within children, according to The Childhood Brain Tumor Foundation. The cancer attacks a child’s brain stem at the base of the brain and is aggressive.

Tova Murray found out about Kyler’s cancer on Oct. 19, 2015, the Monday after his diagnosis when Rebecca was at the bus stop to let the bus driver know about Kyler’s diagnosis. It was a serendiputous moment for Murray, who isn’t usually out at the bus stop. Until that day, she only knew Rebecca as “Kyler’s mom,” and Rebecca knew Murray only as “Keegan’s mom.”

But on Oct. 19, 2015, Murray’s heart melted and “from that moment I just responded and reacted in whatever way was put on my heart.” She said it was an “unexplainable connection” she instantly formed with the Bradleys. Murray immediately organized a Halloween party on Oct. 30 to support Kyler and his family.

“We all believed in Kyler’s miracle, and we believed Kyler was going to be saved,” she said.

Murray, along with David Diehl and the Bradleys, are the driving forces behind the KylerStrong Foundation, which gives 100 percent of all funds raised to DIPG research at Cincinnati Children’s Hospital Medical Center.

While the goal is to eclipse the $44,000 donated in 2016, Murray said it all “boils down” to spreading the word.

“Without the awareness we don’t have the support,” she said. “I feel like it’s our purpose to tell people about DIPG. It’s something that has zero percent survival rate when diagnosed, and when you hear those words, it equals death. It equals a terrible struggle for a family.”

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And for Murray, she has to make people aware of the disease because it was part of a promise she made to a dying boy. She said Kyler didn’t want other children to go through this disease.

“I have to get the awareness out there to be able to get the research money out there that’s needed,” Murray said.

There were many organized events in the months following Kyler’s death to raise and donate money for DIPG research at Cincinnati Children’s Hospital Medical Center, but there were also many fundraising events the Bradleys were unware of, and that made them even more in awe.

Though there is no cure, and treatments appear to only delay what has been the inevitable, a group of researchers in Chicago have found a possible treatment for DIPG. However, phase one of testing isn’t possible until the end of the year at the earliest.

“It’s a horrible disease for children,” said Ali Shilatifard, chairman of the Department of Biochemistry and Molecular Genetics at Northwestern University’s Feinberg School of Medicine. “Molecialy, there’s very little understanding.”

Shilatifard believes the research by he and his team at Northwestern “provides a molecular start for the treatment of DIPG.”

“Right now, this is the best shot we have,” said Shilatifard.

This research was made possible by the National Institute of Health and the tax dollars allocated to the National Cancer Institute. Projected cuts of 30 to 40 percent to the National Cancer Institute could affect research as it takes money to find a cure, Shilatifard said. Researchers spend up to 16 hours a day, seven days a week studying the disease “because they really believe in the mission we’re working on.”



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