Just before the start of her freshman year in high school, Courtney Wagner had a headache every day for a week. She took some Advil and then, on the first day of classes, played a varsity soccer game without any sign of trouble. But the next night, as she walked into a restaurant with her mother and four younger siblings, she stopped dead in her tracks. She suddenly had a terrible headache and needed to go home right away.
Thinking she may have suffered a concussion from heading the ball in soccer, her mother, Jamie, dropped off her other children at their Farmington home and took Courtney to a nearby hospital. Although there were no obvious signs of a neurological problem, a CT scan showed a mass in Courtney’s brain. Stunned and upset, Jamie and Courtney were taken immediately by ambulance to Golisano Children’s Hospital at the University of Rochester Medical Center, where an MRI revealed a second tumor – an extremely unusual situation for a child.
The larger tumor, which couldn’t be removed because it was attached to major arteries, was deep in the middle of her brain, near a place that affects vision; the smaller one was toward the back, in the cerebellum, which affects balance – two very important areas, especially for an athlete. A biopsy of the larger tumor revealed that Courtney had glioblastoma, an aggressive cancer already at stage 4. Eight days later, a second surgery to biopsy the smaller mass gave the family the best news they’d received yet – it was a slow-growing, stage 1 cancer, called astrocytoma, and it could be removed. That meant Courtney would only receive radiation to the large tumor, not her entire brain.
“The doctors did an excellent job letting us know details of her illness in stages, gauging what we could handle,” Jamie said. “They certainly didn’t withhold anything, and thoughtfully answered every question we asked, but they had enough experience to know that we had to understand this illness a little at a time, that it was so much to wrap our heads around.”
The oncology team also went above and beyond usual protocol to give Courtney the best chance for survival, getting Golisano Children’s Hospital approved quickly to participate in a national clinical study. Courtney had six-and-a-half weeks of daily radiation and 42 days of chemotherapy, followed by a month-long rest period. An MRI at the end of that period showed that her tumor had shrunk nearly in half – atypical for such an aggressive cancer. Elated, Courtney then began her next phase of treatment, a year of chemotherapy.
“We would have taken Courtney to the ends of the earth to save her life, but I found out that nothing better was available anywhere,” Jamie said. “We were right where we needed to be.”
Being close to world-class care, she added, allowed her large family to stay together when they needed each other the most, while receiving emotional support themselves. Through Golisano Children’s Hospital, they learned about Camp Good Days and Special Times, which offers sessions for both cancer patients and their siblings, and child life specialists at the hospital played with Courtney’s young brothers during appointments, among other means of assistance.
The chemotherapy treatments were tough on Courtney. She suffered from extreme fatigue and hormonal imbalances, high blood pressure, and lung scarring. But she was resilient, not only keeping up with her classes with help from her teachers and a tutor, but also playing basketball and soccer.
“She was the most active, most bound and determined kid on chemo I have ever seen,” said David N. Korones, MD, who coordinated care with the surgeon and radiation oncologist and developed Courtney’s treatment plan.
Through it all, Courtney used her competitive spirit to help her cope. She’d challenge her mother to a contest, for example, while they spent time in the waiting room before radiation treatments; the person who placed the most pieces in a puzzle before Courtney’s name was called won. She also used humor, searching Google for T-shirts with cancer-related slogans. Her favorite: “One more MRI and I’ll stick to the fridge!” (She also remarked that, despite the fact that Dr. Korones likes baseball better than soccer, they still manage to get along.)
Though prognosis for glioblastoma is dismal – the average life expectancy is 14 months after diagnosis – Courtney has beaten the odds. An MRI taken five months after her tumors were discovered showed the tumor had shrunk again, and subsequent MRIs have shown the tumor to be stable.
“We know that the danger is still there, that this type of tumor can reoccur,” Jamie noted, “but we also know that Courtney is in good hands with Dr. Korones, and that she has the strength to fight through any challenges that pop up. She told the doctors from the very beginning that she does not settle for second place, and that she would win.”
On March 9, five days before her 16th birthday, Courtney passed the 18-month mark since her diagnosis. She is back to her normal routine, attending school regularly and playing sports.
Although she still battles fatigue, a side effect of her treatment, “I power through it each day so that I can get on with my life,” Courtney said. “I wish I didn’t have any tumor left, but I know that if it decided to grow, Dr. Korones will help me again.”
This brave teen has been chosen to be one of the hospital’s five Miracle Kids for 2013, to represent the 74,000 children Golisano Children’s Hospital treats every year. Tune in to Children’s Miracle Network’s News10NBC Telethon on Sunday, June 2, to meet Courtney and her family, along with four other Miracle Kid families, Golisano Children’s Hospital supporters and health care providers. The Telethon is from 10 a.m. to 1 p.m. and 6:30 to 11:30 p.m. on News10NBC. Dial (585) 241-KIDS during the Telethon or donate online to make a gift.
The Telethon is part of a weekend-long celebration called Miracle Weekend, which kicks off Saturday, June 1, with the 17th annual Stroll for Strong Kids fundraising walk and 5K run. The event starts at 8 a.m. at Genesee Valley Park and wraps up at about 1 p.m. To sign up or learn more, visit www.givetokids.urmc.edu/stroll.
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Email Rebecca Youmell