Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Stephanie Strotbeck, Trustee, Wylie’s Day Foundation
2018 is the year that our son, Wylie has been gone as many years as he was alive. It’s a very bizarre and sad way to mark a passage of time, but that’s what we parents do, those of us who have lost our children to deadly brain tumors. Those of us who are members of this terrible club we did not choose to join. Thirteen years is not a very long time to live, but that is what Wylie Strotbeck was given. It was a very rich and loving life, but far too short for any child.
In December 2003, while visiting family in Colorado, Wylie was diagnosed with a brain tumor. He was skiing and was suddenly overcome with head pain so intense; he needed to be brought down the mountain by ski patrol in a sled.
This headache subsided, but returned the next morning and Wylie was taken to a small hospital in Steamboat where a CT scan was ordered. The doctor’s look said it all, a look I will never forget. This was serious. We were emergency airlifted in a snowstorm to Children’s Hospital in Denver where the tumor was confirmed and identified. We flew home, back to Philadelphia, the next day.
Wylie’s diagnosis required immediate surgery, followed by 6 weeks of intense radiation and chemotherapy. During the 1-½ year battle with this tumor called a medulloblastoma, Wylie needed to have his stem cells harvested, surgeries to implant ports to administer medications, additional high-dose chemo and numerous blood transfusions. Complications arose from a beaten immune system. Who needs shingles and sinus surgery when they already have a brain tumor? All treatments were performed at Children’s Hospital of Philadelphia. The nurses and doctors could not have been kinder or wiser. But, what they knew then, was not enough.
All this time, Wylie attended school whenever he was able and was home schooled when he could not physically be with his class. He demanded a certain level of excellence from himself and did not want to repeat a year of school. He continued to play soccer and baseball, using a runner when needed and ducking out to throw up in a nearby garbage can when the effects from the chemo overwhelmed him.
9 months after diagnosis, Wylie’s scan of his brain appeared clear of tumor. We were very optimistic although we knew the incidence of re-occurrence was huge unless we administered one final blast of high-dose chemo that was very risky and would wipe out the entire immune system. Before the procedure, it was necessary to have another MRI. Much to everyone’s concern and horror, the tumor had returned. This rarely occurs mid-treatment. The clinical trial we had placed our hopes in was now out of the question. Experimental therapies were all we had left. From Jan 2005 to April 16, Wylie fought bravely for the life he loved. His enemy was unyielding.
March 3, we brought Wylie home from Children’s Hospital one last time, promising him he did not have to go back. For the last 6 weeks of his life, we were able to care for Wylie, surround him with love, and bring him into the sunshine. He died in our arms on April 16th.
My father was the motivation behind the creation of Wylie’s Day. With-in a few weeks of Wylie passing, our foundation was up and running and we were holding our first fundraiser. Over the past 13 years, we have funded CHOP neuro-oncology, as well as clinical trials at other children’s hospitals and the CBTTC. To date, no cures have been found and progress has been limited.
I think about all the grieving parents and their kids who did not make it. I think about the kids who did and the debilitating long-term effects of their treatments. I hope that the CBTTC will be able to provide answers. We can never bring our kids back, or take away the suffering, but let’s make sure there is hope for the future. And that future needs to be now.
The CBTTC has provided a true collaborative environment, which is novel in so many respects. This is the only way we will find cures for our kids. The science is there, the information being gathered is precise and being shared in ways that were not even possible a few years ago. Exceptionally brilliant researchers continue to devote their entire lives to discovering where these brain tumor monsters come from and how to kill them. Thirteen years, it’s a short lifetime for a child. It’s a longtime waiting for a cure. We are ready!