Jun 18, 2019
patient story
finding a cure for brain tumors
Blake Barr
The day Blake Barr was diagnosed with cancer, he wasn’t worried about the softball-sized tumor in his brain. He was more upset about not making it to the swimming pool that afternoon as he had planned. Like most 10-year-olds, he just wanted to out of the hospital and back outside – fishing, playing with his cat or hanging out with his Grandpa.
His mom, Amberly, had a different viewpoint. “I will never forget looking at that image – something inside of Blake that should never be inside a child,” she said. In July 2016, she saw for the first time a black and white MRI scan of that very rare tumor that had grown in just a few months.
“For a couple of weeks, Blake had been complaining of headaches and blurred vision, so I made him an appointment with the eye doctor,” Amberly remembers. “One morning after breakfast, he just collapsed. We brought him straight to Dayton Children’s emergency department.”
In what would seem like a whirlwind following that day, neurosurgeon Laurence Kleiner, MD, removed the tumor in a more than seven hour surgery. Cancer specialist Jordan Wright, MD, then managed Blake’s cancer care, connecting him with Children’s Hospital of Philadelphia for seven weeks of proton therapy to zap any remaining cancer tissue with targeted radiation.
Blake’s tumor was anaplastic ependymoma stage 3 cancer. While brain tumors are the second most common cancer found in children, only 200 cases of Blake’s type of tumor are seen every year in the U.S. in kids and adults. Therapies to treat brain tumors haven’t changed much in decades. Many tumors don’t respond to chemotherapy and the other available treatments can have side effects that cause life-long damage.
Blake became one of the first children to donate his tumor tissue to an endeavor that will revolutionize how brain tumor research is done. It’s called a living bio bank. Started by Robert Lober, MD, at Dayton Children’s, it collects tumor tissue and then grows it in lab. By keeping it alive, researchers can come back again and again for a sample, trying new therapies and treatments. Dayton Children’s bio bank is now a part of the Pediatric Brain Tumor Atlas, one of the world’s most comprehensive collections of childhood brain tumor data now available to all researchers worldwide for free.
“Donating it to science creates a sense of comfort that, even though Blake went through surgery and had the tumor removed, it doesn’t stop here,” says Amberly.
“We are gaining understanding to prevent and stop childhood cancer and brain tumors. It helps soothe the fear and the uncertainty that we went through, and it creates hope for a whole bunch of families.”
finding a cure
Learn more about how the living bio bank at Dayton Children's is helping to find a cure.
Through it all, Blake’s medical team helped him focus on just being a kid. They knew he loved aquariums so one time when he was in the hospital, they set up a narwal hunt for him. He was granted a Special Wish and chose to go to Atlantis in the Bahamas to swim with the sharks.
He was declared cancer free in spring of 2017 and celebrated with a big party at his grandma’s house in St. Paris in Champaign County. He’s back to enjoying his math and science classes at Graham Middle School where he recently shared his experience with his classmates. While Blake recovered amazingly well, his mom has noticed some changes in his emotions and mannerisms, which is common after surgery on the brain. Dayton Children’s doctors will continue to watch him closely. He will return every six months for an MRI and receive follow up care from psychologists, physical and occupational therapists and ophthalmologists.
Amberly looks at her son, now on the verge of entering his teenage years, and knows that he and his tissue donation will play a part in changing the way brain tumors are treated – maybe even finding a cure. “I don’t think he knows what it means yet. He knows it’s big, but he can’t comprehend just how big.” she says softly, looking at Blake thoughtfully. “But I do. And I know he will one day. One day, he will look back and be able to say ‘I helped cure brain tumors in kids.’”
"One day, he will look back and be able to say ‘I helped cure brain tumors in kids.’”
“It feels amazing that I survived something that not many other people can,” says Blake. “It will be even more amazing when we can figure out what’s causing it. Then we can stop it.”
