While some families must travel thousands of miles to Children’s Memorial Hospital, others are fortunate to find its world-renowned expertise right in their own backyard. Denyse and Steve Reese of Glen Ellyn, Illinois, discovered this life-saving advantage when they faced agonizing decisions for the care of their daughter Gabby, who was diagnosed with a brain tumor at the age of four.
In December 2005, the Reeses were in the Smoky Mountains of Tennessee visiting family when Gabby suddenly went into convulsions. On the way to a local hospital, the little girl, who had no prior health problems, began vomiting and losing awareness. Following the results of a CT scan, the doctors sat down with Gabby’s parents and delivered devastating news. “I’ll never forget that moment, when they told us that our little girl had a tumor in the left frontal lobe of her brain,” says Denyse.
Gabby was transferred by ambulance to the nearest children’s hospital, which was in Knoxville, Tenn., where doctors prescribed anti-seizure medications and advised that Gabby would need to undergo surgery soon. The family flew home, afraid to drive back through remote areas where specialty care was not available.
Back in Chicago, Steve, Denyse and their family members threw themselves into learning everything they could about pediatric brain tumors. “We discovered that a key factor in long-term survival is to seek treatment at a brain tumor center,” says Denyse. Through various referrals and extensive research, the name of one expert consistently emerged: Tadanori Tomita, MD, head of the Division of Neurosurgery at Children’s, and medical director of the hospital’s Falk Brain Tumor Center.
Denyse and Steve met with Dr. Tomita and Wendy Stellpflug, RN, to discuss Gabby’s surgery. “They spent hours with us, explaining everything in such a thorough and compassionate way,” she says. “We left with the confidence that Gabby would be in the best possible hands with Dr. Tomita and his team.”
Neurosurgery carries a host of serious risks, from paralysis to diminished cognitive function. Worldwide, only a small pool of individuals is trained specifically in pediatric neurosurgery. “Brain surgery is a frightening prospect to most people, but even more so when it involves children, whose brains are still growing and developing,” says Denyse.
The Reeses had to go through an extensive appeals process with their health insurance provider in order to secure out-of-network coverage for Gabby’s surgery with Dr. Tomita, who is the Yeager Professor of Pediatric Neurosurgery. “This was the most important decision of our lives,” says Denyse. “We were prepared to sell our house if we had to — whatever it took to ensure the best care in the world for Gabby.”
A few weeks after her diagnosis, in January 2006, Gabby underwent surgery to remove the tumor in her brain. “That’s another moment I’ll never forget,” recalls Denyse with tears in her eyes. “Just before the team took her into the OR, we had to let go of her hand and trust that she’d come back to us.”
A few hours later, Dr. Tomita emerged with positive news: he felt confident that he had been able to remove the entire tumor. Even better, Gabby was recovering exceedingly well, showing no signs of complications or impairments. She even had a hearty appetite, requesting a cheeseburger just hours later. After a few days in the hospital, she returned home. But for Gabby’s parents, the operation was just the beginning of a new chapter, one that required difficult decisions. Soon they received the pathology report about the tumor, which was classified as a grade three ependymoma.
“We learned that this is a special kind of tumor that likes to recur,” says Denyse. While radiation treatment is considered standard protocol, Dr. Tomita recommended a “watch and wait” approach, strongly advising against radiation for Gabby, based on his close assessment of the tumor. Others adamantly disagreed. “One doctor at another hospital told us that if we didn’t opt for radiation for Gabby, we were essentially killing our own daughter. It was agonizing,”says Denyse.
Children are more sensitive than adults to the potentially harmful effects of radiation, and because of their age, will have to live longer with any complications, which can include serious physical and mental impairments. Radiation can also contribute to the growth of secondary tumors. As Gabby’s parents weighed the risks, they considered her young age and a host of quality of life factors. “If we could even just delay radiation until she was older, it would be better for her in the long-term,” says Denyse. “Ultimately, we decided to follow Dr. Tomita’s recommendation, since he had been the one to actually see and touch the tumor. It was a leap of faith, but we placed our trust in Dr. Tomita and his expertise.”
By all indications, it was the right decision. Nearly four years later, the tumor has not returned, and Gabby is a healthy, happy 8-year old-girl with a zest for life. She enjoys bike riding, rollerblading, soccer and playing with her younger sisters, Emily and Caroline. “It’s hard to put into words what Dr. Tomita means to us,” says Denyse. “Not only because of his medical expertise, but also the warmth and compassion he’s shown our entire family. The nurses at Children’s Memorial are also extraordinary. They make you feel so special, like you’re the only ones they’re caring for. We’ve come to consider Wendy (Stellpflug) a part of our family.”
Denyse describes an ependymoma diagnosis as an “undertow,” something that is always pulling at you. She says the fear of the tumor recurring never goes away, but that being a part of a support group with other parents provides continual hope. “It’s also a great comfort to know that Children’s Memorial is there for us — and for all the families in our region,” she says. “You don’t realize what a tremendous resource this hospital is until you really need it. We’re just so fortunate to have world-class pediatric experts right here in Chicago.”
This article originally appeared in the Fall 2009 issue of Heroes magazine.