Why Drew's Family Runs for Brain Tumor Research

June 17, 2016

When he was three, Drew was diagnosed with a rare form of brain tumor with a dire prognosis. Now eight, he just played in his baseball league's All-Star game.

On July 28, about 1,500 participants will lace up their running shoes for the 14th annual Run for Gus run/walk. Presented by the Young Associates Board, this year’s race is expected to raise more than $100,000 for pediatric brain tumor research and Family Services at Lurie Children’s.

For this year’s patient champion, eight-year-old Drew Ames and his family’s Team Drew, the race is particularly meaningful: Drew benefitted directly from brain tumor clinical research at Lurie Children’s. “Had Drew been diagnosed just five years earlier, before a new treatment was available, he might not be here with us today,” says his mom, Dayna.

A few weeks before Dayna was due to give birth to her fourth child, Drew, then age three, began to experience intermittent muscle contractions in one leg. He was examined by a pediatric neurologist at Lurie Children’s partner hospital Northwestern Medicine Central DuPage Hospital. Diagnostic scans were ordered, and the next day Dayna and her husband, Randy, received devastating news: Drew had a brain tumor.

“There I was, nine months pregnant, at a time that should have been joyful for us,” says Dayna. “Everything changed in an instant.”

Drew was transferred to Lurie Children’s, which has one of the nation’s largest pediatric brain tumor programs. There, Stewart Goldman, MD, a neuro-oncologist and Head of Lurie Children’s Division of Hematology, Oncology, Neuro-oncology & Stem Cell Transplant, met with Dayna and Randy, and ordered additional tests. Two days later, neurosurgeon Arthur J. DiPatri, Jr., MD, removed the entire tumor, though it would take several days to determine its exact type.

The day before Dayna gave birth to daughter Kelsey, Dr. Goldman called Dayna and Randy with the results. Drew had a rare, aggressive tumor called an Atypical Teratoid Rhabdoid Tumor (ATRT). Patients with the tumor generally have a dire prognosis. Fortunately, Dr. Goldman had recently participated in a multi-center clinical research trial of the first therapy specifically developed for children with ATRT, which had encouraging results.

The therapy called for a treatment plan that included a year of intense chemotherapy treatments every three weeks, which resulted in hospital stays of between two and six days, and six weeks of proton radiation therapy.

The treatments took a toll on Drew. He developed a number of complications, including fungal pneumonia and septic shock, the latter resulting in a 10-day stay in the Lefkofsky Family Pediatric Intensive Care Unit.

It took a year after his treatments ended for Drew to begin to regain his strength. Gradually, his follow-ups with his multidisciplinary team of specialists grew less frequent. He will be closely followed for years through Lurie Children’s Pediatric Neuro-oncology Survivorship Clinic to monitor for effects arising from his treatments.

Today, Drew loves to play sports, and was recently chosen to play in his baseball league’s all-star game. Dayna reports that he’s doing well in school, and is looking forward to starting third grade in the fall. 

Drew’s family is delighted that he was chosen as the Run for Gus patient champion and for the opportunity to spread awareness of the importance of pediatric brain tumor research.

“His treatments were grueling, but we’re so grateful that this treatment option was available for Drew thanks to research being done at Lurie Children’s,” says Dayna.

Stewart Goldman, MD, is the Meryl Suzanne Weiss Distinguished Professor in Hematology, Oncology and Stem Cell Transplantation, and also serves as the Director of the Center for Clinical Trials Research at the Stanley Manne Children's Research Institute at Lurie Children’s.