Vickroy: Honoring son’s memory by fundraising for progress
By Donna Vickroy email@example.com Twitter: @dvickroy November 22, 2013 9:50PM
Amy McNicholas holds a portrait of her son, John, who died of brain cancer at 15. | Donna Vickroy~Sun-Times Media
Updated: December 25, 2013 6:33AM
On the day John McNicholas was diagnosed with a high-grade brain tumor, he basically was handed a death sentence, his mom said.
And true to that diagnosis, John, a strapping St. Rita High School athlete who awoke one morning in March 2010 with a bad headache, would succumb in less than a year to the horrific disease. He died at 15 in January 2011.
Amy and Ed McNicholas, of Chicago’s Beverly community, would watch helplessly as their charming, funny, “old soul” of a son lost his ability to walk, talk and enjoy any quality of life.
“It was an unbelievably heartbreaking visual to see what brain cancer could do to him in the span of 10 months,” Amy said.
Amy knows there’s nothing she can do to bring her oldest son back. But there’s plenty she’s doing to help give other children with similar diagnoses a better quality of life while science searches for a cure.
Throughout John’s struggle, Amy said, she was stunned at the lack of information and support that was available to families with a child with a brain tumor. Even more shocking was how brutal the treatment would be.
“John got a lifetime dose of radiation to his developing brain,” she said.
As he clung to life, she worked eight to 10 hours a day researching his condition. She contacted doctors at some of the most prestigious hospitals in the country, including Lurie Children’s Hospital of Chicago, Dana-Farber Cancer Institute, Cedars-Sinai Medical Center and Duke University Hospital — only to learn the grim reality.
“There are no good treatment options for kids with this disease today,” she said. “And there has been no real progress in that area in over 30 years.”
While uncommon — about 3,500 to 4,000 patients are diagnosed each year in the United States — brain cancer affects children very differently than it does adults, said Jason Fangusaro, pediatric neuro-oncologist at Lurie and associate professor of pediatrics at Northwestern University’s Feinberg School of Medicine. He also was John’s doctor.
There are few kinds of adult brain tumors, but there are many kinds of pediatric tumors, and they are much more diverse, with many types of histologies, each requiring a different kind of treatment, Fangusaro said.
Those treatment options are typically a combination of surgery, chemotherapy and radiation. The side effects of treatment, Fangusaro said, can be acute and even lifelong. And most high-grade gliomas, which is what John had, are fatal — leaving families to choose between simply waiting things out and putting a child through painful debilitating treatments.
Amy is determined to provide better options for children diagnosed with malignant brain tumors.
“I want these kids to have a better quality of life,” she said.
In losing a son, Ed and Amy have found a new purpose for living. Their slogan now is “Live Like John,” a tribute to John’s spirit and enthusiasm for life.
They’ve set up a foundation, the John McNicholas Pediatric Brain Tumor Foundation, with a clear mission to provide funding to the doctors and scientists at the forefront of researching this disease.
Various fundraisers are held throughout the year. Registration is open for the fifth annual Beverly Hills Turkey Trot 5K Run and Family Walk on Nov. 30. Proceeds will benefit the 19th Ward Youth Foundation and the McNicholas Foundation.
Oak Lawn and the communities of Beverly and Mount Greenwood, which have lost six other children to pediatric brain cancer in the past 10 years, have embraced their efforts.
Other local children who have succumbed to the disease include Abby Wujcik, of Oak Lawn; Maeve McNicholas (no relation), of Beverly, and Danny Host, of Tinley Park.
“This community is amazing,” Amy said. “It has been so supportive.”
The McNicholas Foundation has been so successful in terms of raising awareness and money that it’s about to award its first $200,000 research grant.
Though Fangusaro has given many families the same prognosis that he gave to the McNicholases, he said his job is uplifting in that he gets to work with amazing kids who have amazing families.
“I am honored to have this job,” he said. “I get to watch people really prioritize what is important in their lives.”
He also works very closely with other doctors who do “basic science,” which means they are in the lab studying tumor cells.
Fangusaro is a member of the McNicholas Foundation’s medical advisory board, which helps decide where to channel funds for maximum results.
“Our hope is to better understand how to target what causes these tumors,” he said, adding that foundations are a lifeline to those researching pediatric brain cancer.
“Government funding is limited because this is not as common as, say, breast cancer,” Fangusaro said, and foundations such as the one the McNicholases started fill the large gaps left by insufficient government funding.
“The McNicholases are amazing,” he said. “Instead of just walking away and saying, ‘we’re done with this’ after their son died, they stood up and said, ‘We want to make a change, to have a better impact on the world.’”
In addition to raising research funds, the foundation also provides programming and activities for older children going through treatments.
In 2012, the foundation created and donated “John’s Cart of Fun” to the Lurie Children’s Day Hospital. It contains 30 iPads for patient use and supplies a much-needed distraction for children who can spend up to 100 days a year in clinics and hospitals.
For more information on the John McNicholas Pediatric Brain Tumor Foundation, visit livelikejohn.org