Success tastes like a tray of cookies fresh from the oven. Just ask 14-year-old Grace Ogle, a childhood cancer survivor who loves to bake in her free time. When she was a toddler, doctors in Virginia predicted she would die from a brain tumor called ependymoma. Today, she’s flourishing—making and sharing homemade treats with her family and friends.
Watching Grace thrive may be the sweetest reward of all for her care team at St. Jude Children’s Research Hospital. Her doctor, Thomas Merchant, DO, PhD, St. Jude Radiation Oncology chair, uses radiation to treat children with cancer. For the past 25 years, he has been working to increase survival rates for children with ependymoma, the third most common pediatric brain tumor.
Grace, who can often be found in the kitchen making cookies, is proof that radiation can play a role in long-term survival.
In 2006, Julianne and Nathan Ogle were living in Chesapeake, Virginia, with their four children. Grace, the youngest, was 2 years old at the time.
“We were at the doctor for a well-visit,” remembers Julianne. “They noticed her head wasn’t in the normal size range, and she had some trouble walking.”
A scan revealed Grace had ependymoma. Doctors told the family her condition was terminal. Fortunately, a friend led the Ogles to Merchant and St. Jude, which offered a clinical trial for young children with the disease.
“Before Grace was diagnosed, we knew nothing about clinical trials,” Nathan says, “but there were no options for her in Virginia. So, as daunting as it was, we knew we had to get her a referral to St. Jude.”
Hope for Grace
Grace was a candidate for a clinical trial led by Merchant. It was the first cooperative group study to give radiation immediately after surgery to children under age 3 with ependymoma. Historically, infants and toddlers with that disease have a worse prognosis than older children.
“Part of being a doctor and researcher is refusing to accept the status quo,” Merchant says. “We are always striving for better treatments and more options to improve outcomes for our patients.”
The clinical trial explored whether radiation immediately after surgery could improve outcomes for all children, regardless of age. Open at more than 100 locations, the study enrolled nearly 400 patients.
“Knowing there is no other option for your child is scary,” Julianne says. “This trial gave us the first bit of hope that we could actually save her life.”
Part of being a doctor and researcher is refusing to accept the status quo. We are always striving for better treatments and more options to improve outcomes for our patients.
Although the clinical trial closed in 2007, the study didn’t end. Long-term follow-up of participants showed that radiation after surgery nearly tripled the survival rate for childhood ependymoma.
The treatment helped achieve an overall survival rate of 85%. More than 75% of patients had progression-free survival. Recently published in the Journal of Clinical Oncology, the findings show that radiation can improve outcomes despite age and ependymoma subtype.
“All along, we were grateful for the trial,” Nathan says. “Even if the outcome isn’t what you hope for your child, it is an opportunity to make things better for families who walk this road after you. That added to our purpose.”
Twelve years after joining the study at St. Jude, Grace is not only a skilled baker, but also a passionate basketball fan, a student athlete and a devoted aunt who delights in spending time with her parents, older siblings and their families.
“These results confirmed what we’ve long seen in the clinic: that surgery and radiation are the backbone of ependymoma treatment,” Merchant says. “Now we can move on to testing new agents and finding other treatments in addition to radiation therapy to further improve outcomes for kids like Grace.”
From Promise, Summer 2019