Among the pastel blues and earthly greens of the St. Jude Brain Tumor Clinic’s forest-themed hallway, Fletcher Fazenbaker lies in her stroller and shakes her rattle at her parents as they chat with Fletcher’s physician, Aditi Bagchi, MD, PhD, Department of Oncology, Division of Neuro-Oncology.
It is the end of a long week for the family, who traveled from Maryland to Memphis to check treatment progress on Fletcher’s infant-type hemispheric glioma (IHG), a subtype of high-grade glioma — a rare brain tumor — that was not classified by the World Health Organization’s brain tumor classification guide until 2021.
Bagchi says infants born with this tumor are diagnosed at birth after delayed labor due to an enlarged head when an ultrasound reveals a large tumor that sometimes takes up half the brain. Many families are told the tumor is incurable and are sent home on hospice care.
The Fazenbakers were one of those families.
When Fletcher was born, Stevee and Billy Fazenbaker were told their daughter had a congenital brain tumor that came with a life expectancy of just two weeks. With no answers and little hope, the new parents went home to cherish what time they had with their daughter.
But as Fletcher gained developmental milestones over the following weeks and months, the Fazenbakers turned to St. Jude in search of clarity.
Unbeknownst to the family, a team of clinician-scientists, including Bagchi, had spent the past several years studying tumors like Fletcher’s on a St. Jude clinical trial called SJYC07.
In the trial, investigators analyzed the molecular characteristics of pediatric tumors classified as high-grade gliomas. While high-grade gliomas were historically categorized as one type of brain tumor based on standard analyses (like how the tumor looks under the microscope), the molecular characteristics told a different story.
Advanced molecular analysis on high-grade gliomas revealed a new category of high-grade glioma: infant-type hemispheric glioma (IHG).
With a new classification and more information about the tumor, clinicians can make an accurate and informed diagnosis and identify abnormal gene combinations that can be used as targets for treatment.
“What we have been seeing in the past few years is the fact that IHG is such a curable entity, and that is largely unknown to the general pediatric medical professionals,” says Bagchi. “There is a possibility here for treating these tumors, and we don’t want anyone to write these babies off.”
At St. Jude, Fletcher received what her parents once thought impossible: a diagnosis and treatment plan. Fletcher’s mother, Stevee, says they are now working on “rolling, picking things up, shaking things and kicking. She never really stops moving unless she’s sleeping. She’s a very busy girl.”