INDIANAPOLIS (WISH) — Doctors had tried chemotherapy and traditional treatments to treat 4-year-old Quanny Ray’s brain tumor.
Nothing was stopping its growth — until February, when he began taking a newly approved drug as part of a program at Riley Hospital for Children at IU Health.
Quanny was racing around full of energy during his Tuesday checkup, but his family says he was very different just a few months ago.
“The violent sickness, the sleeping for hours and hours, and then that unbalance,” said Quanny’s mom, Bridget Ray. “It just made me say something needs to be addressed.”
Quanny’s tumor, which he has had since birth, was bigger than his actual brain and was continuing to grow.
“I was devastated to look at him as a very small boy. It took me to tears when they showed it to me because I’m thinking there’s no way that this is in his head,” Bridget Ray, said.
By testing samples of the tumor, doctors learned it was growing because two genes were fusing together.
“What happens is they basically tell the DNA to start growing and making new cells,” said Dr. Michael Ferguson, medical director of the Pediatric Cancer Precision Genomics Program at Riley Hospital for Children.
“And when they get fused together, it’s like a light switch that’s stuck in the on position and we can’t turn it off. That’s what the Larotrectinib drug is doing. It’s actually blocking or turning that light switch back off,” Ferguson said.
“There was a medicine that would be available that had not been FDA-approved,” Bridget Ray said. “It was only available to maybe less than 100 people worldwide, but they wanted to try it on Quanny because it’s specific to these two mutated genes.”
After Quanny started taking Larotrectinib, which the FDA approved this winter, the benign tumor shrank almost immediately.
“And he said his tumors … he looked and he said ‘Look! His tumors are melted away!’ And started showing us the MRI pictures and everything,” said Quanny’s dad, Robert Ray.
“He was so excited, and it made me so excited, and it made me happy and I went to hug him. And my wife said I almost knocked him down! He’s just flourished. Like, within the last eight months to a year, he learned how to run, he learned how to jump. He’s putting together more words. You know, we just thank God and we thank God for the care he’s given us through the hospital.”
Because Larotrectinib a new drug, doctors don’t know how long Quanny will have to take it. It could be a couple years, but as of Tuesday, Quanny’s MRI results did not show any new growth.
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