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Meet Our Survivors: Gage Buri

Gage Buri, Pilocytic Astrocytoma Brain Tumor

Gage Buri‘s childhood has already seen a lot. At 7, Gage is a cancer survivor who’s traveled cross-country for treatments with his mother, Karlee, and grandmother Terri.

Naturally, the family has become a close one, bonded by experiences that young Gage barely remembers. But Karlee and her family remember every turn of Gage’s journey, which began when he was just an infant.

As a baby, Gage had trouble gaining weight. Concerned that her “skinny” baby might have a blockage in his stomach, Karlee took Gage to a pediatrician in her hometown of Paducah, Kentucky. Then she took him to a gastroenterologist in Nashville. But neither doctor found anything wrong with Gage’s digestive tract.

Although he wasn’t thriving, Gage was seemingly always very happy, constantly smiling at everyone. Yet, Karlee was frustrated and puzzled, and when another issue cropped up, she knew there was a problem: Gage’s dark, shiny eyes started moving constantly from side to side. Karlee took him to a pediatric ophthalmologist in Cape Girardeau, Missouri, and an hour later he was in the hospital receiving an MRI. The results showed a mass about the size of an  egg. It occupied about one-third of his brain.

“It was so large that doctors didn’t even want us to take him home,” she said. “They were concerned that something could happen because of the pressure on his brain.”

The family flew by air ambulance to a children’s hospital in Washington D.C. for a biopsy that revealed Gage had a benign, but dangerous, juvenile pilocytic astrocytoma brain tumor. The tumor was classified as slow-growing, but it was pressing against his optic nerves and the hypothalamus, the part of the brain that controls almost all the body’s hormonal functions. The pressure eliminated his appetite and also made Gage euphoric, explaining his constant state of happiness, a condition called diencephalic syndrome.

Relief at finally having a diagnosis was short-lived. The family then endured Gage’s weekly chemotherapy treatments in Washington for 10 weeks, followed by additional weekly chemotherapy treatments for a year at a children’s hospital in St. Louis.

Gage seemed to be back on track for a few years, and then a setback – tumor growth – started the family’s search for treatment all over again. He underwent surgery to remove some of the tumor, but he would need additional care to treat the remaining tumor.

Gage was only 6, but he’d had what seemed like endless chemotherapy treatments and a surgery. And when Karlee and her mom were looking for new answers, Terri remembered some information she’d saved – when Gage was well – about proton therapy treatment.

“From what we’d read, we knew that proton radiation was different,” Terri said. “We knew that the beam would stop at the tumor and that was really important, because Gage’s tumor was so large that it was affecting a lot of areas in his brain. We were worried that regular radiation would damage those good areas.”

Dr. Anita Mahajan, medical director of Proton Therapy Center and director of Pediatric Radiation Oncology, says that proton therapy can be an excellent option for children with brain and other tumors that require radiation because “we are able to direct the treatment so precisely to the tumor and spare surrounding, healthy tissues. And by reducing radiation to healthy parts of a developing brain, we can ultimately minimize the long-term effects of treatment, including loss of cognitive function and second malignancies – both such critical issues to consider especially when treating kids.”

The family consulted with doctors at MD Anderson’s Proton Therapy Center, and a week later, they returned so that Gage could start his treatments.

When the family arrived for proton treatment, Gage was completely incapacitated. “He couldn’t walk or talk and he was puffed up on steroids. But the staff didn’t treat him like an incapacitated child. They saw Gage as a normal child, and they talked to him like he was a normal child,” Karlee remembers.

During the six weeks of Gage’s treatment, Karlee and Terri noted visible signs of improvement in his condition.

“The morning after his first treatment, he said ‘good morning, mommy,’” Terri remembers. “It was slow and slurred, but we knew he was getting better.”

Because of Gage’s condition when he arrived at the center, he was not very active during his treatments. However, Karlee and Terri were encouraged to see other pediatric patients at the proton therapy center who were laughing and playing with no obvious side effects from their proton treatments.

By the time Gage completed his treatment at the proton therapy center, he was noticeably improved due to the shrinking tumor. He was speaking in slow, but full sentences. He could laugh and smile, and he was beginning to walk again.

“It was amazing for those of us involved in Gage’s care to see the progress he made during the course of his proton therapy treatment,” said Mahajan. “He and the other young patients and families we are able to help overcome a devastating diagnosis are the reason we do what we do every day.”

Gage celebrated his 7th birthday about a month after completing his proton therapy treatments and enjoyed being the life of the party.

“He doesn’t run as fast as most kids his age, but he’s very active,” Karlee said. “He likes being outside and loves playing kickball. Seeing him, you’d never guess what he’s been through.”

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© 2016 The University of Texas MD Anderson Cancer Center