7-year-old with uncommon brain tumor gets rare cancer treatment
These days, the Daughtery family is embracing every moment that make up every day.
“I’m afraid to lose a moment,” Brad Daughtery said, “You don’t take anything for granted.”
That’s because of what they’ve been through in the 154 days, especially on day one.
“He screamed outside of our bedroom, loud scream and then and that’s when we knew something was wrong. We went into panic mode and started figuring out what was going on and basically held him in his room, started to go limp,” Daughtery said about his 7-year-old son, Christian.
He was rushed to a hospital in Muncie.
“We heard them yelling that this is life or death,” said Daughtery.
And then he was rushed to Riley Hospital for Children at IU Health.
“Christian came in very sick, actually dying,” said pediatric neurosurgeon Jeffrey Raskin.
He had a tumor the size of a baseball that had ruptured.
“I shook the hand of his doctor at the time and he shook his hand and I told him take care of my boy and tears in my eyes,” said Daughtery.
That doctor saved Christian’s life. But he needed another surgery to remove the tumor. That happened on day three.
“He bled a lot during surgery and it limited my ability to resect the tumor in one setting, forcing us to close, in a pretty quick fashion,” said Raskin.
“He just looked beat and defeated and when he came out he sat down and he didn’t have good news to deliver, he told us surgery didn’t go well and that he explained that Christian has possibly three days,” said Daughtery.
Three days with their boy.
“We watched his heartbeat and fell asleep to his heartbeat,” said Daughtery.
It was a heartbeat strong enough to give Christian a fourth day.
“There was a lot of celebration,” said Daughtery.
A second surgery successfully removed what turned out to be a very rare tumor.
“It’s less than five percent of brain tumors in children, and more rarely is the tumor high grade or cancerous. That’s what Christian’s turned out to be,” said pediatric oncology fellow Alex Lion.
“The standard of care for this type of tumor has not been well defined. It’s very rare in the past, intensive chemo therapy, radiation had been tried, both of those can be hard on children as they’re trying to recover from major surgeries. I was hopeful that we could find an oral targeted chemotherapy agent that would be more mild and so I consulted the precision genomics team, that’s where the story really took off.”
“The precision genetics program is a clinical program that is meant to find genetic changes in the tumors that we’re looking at, brain tumors as in Christian’s case. We’re looking to find changes in the genes to say ‘Hey there may be a drug that will work better for his tumor,’ said Michael Ferguson, Medical Director of Precision Genomics Program, a program that has helped around 100 children in the past few years.
What they found was something never reported before.
“Lo and behold we found a very interesting gene fusion that’s never been reported before, we were able to say that’s probably driving that cancer and this certain drug that he’s on that’s been FDA approved in adults but not in children but would be a good drug to use to ever keep that tumor coming back,” said Ferguson.
Christian left the hospital with that medication on day 66. It’s been 87 days since then, and Christian’s family had their first chance to see results of his first MRI since leaving the hospital.
“It’s exactly what we would want.”
It’s news allowing the family to continue embracing every moment, of every day. And a treatment that’s not only helping Christian, but many pediatric cancer patients to come.
“We’re able to see the patients with very difficult to treat disease or relapsed and loo, or these targets, there’s a lot of new drugs that adults use these days or just don’t know how to use in pediatrics, try to find reasons to use those targeted drugs,” said Ferguson.