Like the characters in the Disney “Cars” movies he so loves, Chase Ewoldt is a study in motion. His mom, Ellie, jokes that the 3 ½-year-old’s first name truly suits a little boy who can’t sit still and loves “anything that moves or makes noise!” Chase enjoys being a “typical” little boy, because much in his young life has not been typical. Over the last 12 months he has undergone chemotherapy, radiation and multiple stays at Ann & Robert H. Lurie Children’s Hospital of Chicago in his battle against a rare, highly aggressive form of malignant brain tumor.
“Chase is stubborn, a real fighter,” says Ellie. “I’ve never seen a child as strong as he is, but he needs all that strength in his fight against cancer.”
In July 2012, after Chase had exhibited a variety of unrelated symptoms that required multiple visits to a suburban hospital’s emergency department, tests indicated he had a mass in his brain. Within an hour, an ambulance from Lurie Children’s Transport Team arrived to take him to the hospital in downtown Chicago.
“Hearing that he had a mass was devastating, but my husband Bob and I also felt a sense of relief, because we knew something wasn’t right with him,” says Ellie.
Further tests at Lurie Children’s indicated that Chase had a peach-sized, very aggressive form of brain tumor called an atypical teratoid rhabdoid tumor (ATRT). Only 30 new cases of ATRT are diagnosed each year in the U.S., and the tumor has a high mortality rate. Fortunately, Lurie Children’s is uniquely positioned to treat children like Chase. The hospital is ranked fifth in the nation for Neurology & Neurosurgery by U.S.News & World Report, and its Center for Cancer and Blood Disorders (which includes the Falk Brain Tumor Center) is ranked eighth.
A couple of days later, Chase underwent surgery to remove the tumor. Afterward, neurosurgeon Tord Alden, MD, gave Chase’s parents good news and bad news. Although he was able to completely remove the primary tumor, cancerous cells had spread to other parts of his brain and to his spinal fluid. Ellie and Bob later met with neuro-oncologist Rishi Lulla, MD, who explained that Chase would need an aggressive chemotherapy protocol and radiation therapy.
“Dr. Lulla was very compassionate,” says Ellie. “We knew Chase’s form of cancer had a 20 percent survival rate, and asked him, ‘How you decide whether to put a child through such a difficult treatment?’ Dr. Lulla said that we would make a differentiation between things we were doing for Chase and things we were doing to Chase. At the point when it changed to doing things to Chase, we would have a conversation about it. He was very concerned about Chase’s quality of life.”
The chemo treatments were hard on Chase. He lost his hair, was frequently nauseated and needed periodic readmissions to Lurie Children’s for infections, fevers and other complications. Ellie and Bob also had to reassure Chase’s three brothers and sisters that they couldn’t catch his cancer. In October, Chase began proton radiation therapy.
“He needed to be sedated for his radiation treatments, and he would begin to fall asleep in my arms repeating, ‘I’m so brave, I’m so brave,’” says Ellie. “I would leave the room in tears every time.”
Chase finished his radiation treatments on December 12, 2012 – his third birthday. By mid-January, there were no signs of cancer cells in his spinal fluid. “For first time we had a sense of cautious optimism,” says Ellie. “But although there’s no sign of the disease, this is a particularly vicious form of cancer that can come back.”
Chase has another few months of chemo left, and his challenges continue. In one 31-day period between May and June, Chase spent 18 days in the hospital, made three visits to the Emergency Care Center and underwent seven blood transfusions. Despite the frequent hospital visits and procedures, Ellie and Bob remain grateful to Lurie Children’s for the care their son has received.
“When Chase became sick, we didn’t have time to shop for hospitals,” says Ellie. “But even if we’d had that luxury, Lurie Children’s is the hospital we would have chosen.”
The Ewoldt family believes in supporting pediatric brain tumor research, and recently participated in the Young Associates Board’s 11th Annual Run for Gus Run/Walk in support of brain tumor research and Family Services at Lurie Children’s.