I’m here to represent the issue of pediatric brain cancer specifically. In June 2017, after a rapid onset of neurological symptoms, my three-year-old daughter, Piper, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). I had never heard of it, nor did I realize children could be diagnosed with brain cancer so young. I certainly never expected to hear there was no known cause, nor proven treatments, nor cure for Piper’s diagnosis. DIPG has always been, and remains, terminal at diagnosis. Patients survive a median 9 months from discovery, fewer than 10% survive beyond 2 years. Because of the tumor’s location in the brainstem, surgical removal is not offered. Standard of care is limited: immediate steroids to reduce swelling, and optional radiation to buy more time. Until recently, children with DIPG were not even eligible for clinical trials or offered biopsy.
We were considered lucky because Piper responded so well to radiation – enduring a total of 40 sessions requiring sedation each time – giving her the best possible quality of life until the tumor reached a point where making her comfortable with the help of her palliative care team was our singular consideration. When it came to information, doctors could tell us only what was sure to happen because of the tumor, not why (biologically), or how to prevent it (scientifically). We quickly learned the problem was insufficient research funding, and an unfavorable division of those funds placing pediatric cancer as an afterthought. After 16-months of fighting, we helplessly watched Piper lose function after function (but never cognition), starting with her walking, then her speech, her ability to swallow, smile, and finally her ability to breath. She passed away at home last October, just shy of her 5th birthday, with more unfulfilled hopes and dreams than I could ever list.
Although DIPG took everything from Piper, she inspired the world around her with an unbreakable spirit that only a child could possess. But there was more to what she taught us than to remain positive in the face of adversity – she taught us we can, and must, do more for children. I tell her story because she cannot, and because my hope for a cure did not end with my child’s life. Today, tomorrow, and every day of the foreseeable future another family will be blindsided by a brain cancer diagnosis, and I urge you to do your part to change the ending for them. It’s time.
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I want to thank my wonderful friend, Lindsey, for encouraging me to take this trip to DC, and for speaking for me when I could not. Like all the advocates who participated, she had her own story to share, and every one of the 300+ stories needed telling.
I also want to aknowledge Representative Jason Crow (CO-06) and his team – particularly his policy advisor who I had the pleasure of speaking with. His office was professional, responsive, and compassionate to this cause. Earlier this month, in response to the efforts of many – particularly the tireless DIPG Advocacy Group – Rep. Crow co-sponsored H. Res. 114 which would recognize May 17 as National DIPG day and ask that this issue be considered a funding priortiy. Currently, Rep. Crow is the only Colorado member of congress to support this resolution. We still have much work to do.