Hilary Olson had no reason to suspect that her daughter Hailey might have a brain tumor.
“Her smile was starting to droop a little, and one of her eyes was a little jumpy,” says the 6-year-old’s mother. “We took her to see a neurologist, and he thought she might have pinched a nerve.
“But when he sent us to Boston Children’s Hospital for an MRI,” she continues, “the radiologists sent us straight down to the emergency room.”
Hailey’s diagnosis came as a huge jolt: a rare, almost always fatal tumor called diffuse intrinsic pontine glioma (DIPG). “The doctors were shocked by the size of the tumor,” Hilary recalls.
DIPGs are so fatal because doctors haven’t had any success at treating them — and in fact haven’t known where to start. The problem has to do with where they occur. DIPGs nestle among the nerves in a portion of the brain stem called the pons, which controls our breathing, blood pressure and heart rate.
“For 40 years, we didn’t have the surgical techniques to safely take a biopsy of a DIPG,” says Mark Kieran, MD, PhD, director of the Brain Tumor Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, a partnership between Dana-Farber and Boston Children’s focused on treating children with cancer.
“In fact, it’s still part of the dogma taught to every oncologist — ‘Don’t biopsy brain stem gliomas’ — because of fears about the risk of severe or fatal damage. And because we couldn’t biopsy DIPGs, we couldn’t study them to learn what makes them tick.”
Looking to turn that dogma on its head, Kieran has launched a DIPG clinical trial that takes advantage of the last 40 years’ worth of advances in neurosurgery and in our understanding of the biology of cancer to target and personalize DIPG treatment. Hailey is the first patient.
“At first the doctors told us that Hailey’s tumor was inoperable, but in that first week we got the call telling us about this new clinical trial,” says Hilary. “It had been approved two days after Hailey was diagnosed.”
The trial — currently open only at Dana-Farber/Boston Children’s, though another 19 centers will soon start participating — brings the hope that, in the future, more children will be able to survive this largely mysterious tumor. Kieran hopes to recruit between 25 and 100 children.
“For the first time, we should be able to give children with DIPG like Hailey personalized treatment options based on the makeup of their individual tumor,” Kieran says. “We have the opportunity to look within DIPG and understand why it differs so greatly from other tumors, which will help us map out better strategies for the future.”
This story first appeared on Boston Children’s Hospital’s Thriving blog. Read more about Dr. Kieran’s research into DIPG in the full story, From boos to hope: Challenging the dogma about deadly brain stem gliomas. For more about treating pediatric brain tumors, watch Dr. Kieran’s webinar on the topic, which appears on the American Brain Tumor Association website.