ALSF Fund: Closer to the Cure Fund
A Medulloblastoma Research Fund
On December 9, 2016, when Cooper was six years old, he was diagnosed with a malignant, fast growing brain tumor called a Medulloblastoma. His diagnosis came after two weeks of intermittent unexplained nausea and one reference to blurred vision. We were lucky. We owe quick identification of his tumor to a combination of informed parental instinct, an astute ophthalmologist friend, and the clinical team at Boston Children’s and ultimately Dana-Farber Cancer Institute.
Over 14 months of treatment, Cooper and our family have experienced sweeping emotions, the warmth of both our closest friends and those we have never met, and an incredible fabric of clinical, rehabilitation, and social experts across a wide range of disciplines.
Over those 14 months, Cooper underwent a 12-hour surgery to fully remove his tumor, 30 rounds of proton-beam therapy (most of which were sedated), three-months straight at Children’s and Spaulding recovering from the surgery and Posterior Fossa Syndrome (which left him mute and mosty paralyzed for two months), several day-surgeries to place a port & feeding tube, over a dozen subsequent hospitalizations for nine cycles of chemo with subsequent transfusions or infections, and weeks on end out of school.
Cooper’s treatment finished in February, 2018, and we are thrilled at how well he has made it through his treatment. He is back to running around like a seven-year-old, joking with his sister, and as inquisitive as ever. Cooper (and his wonderful sister Grace, and mom & dad) will now begin to try to claw back to some kind of normalcy while undergoing periodic scans and proactively managing possible late effects.
Medulloblastoma is the most common type of childhood brain cancers. It is fast growing, but if caught in time, with aggressive treatment can be treated. We are using this fund to channel our efforts to give back and advance the community we have benefitted from over this incredibly difficult time. Cooper’s complex treatment protocols are representative of the areas the Closer to the Cure Fund will focus on for fundraising; Early Identification, Pediatric Neurosurgery, Radiation Therapy Planning & Treatment, Precision diagnosis, Hematology & Oncology Therapy Protocols, Rehabilition and Nutrition, Family Mentoring and Support and Integrative Oncology.
We are enormously thankful to our friends & family who have come together to support us through these complex and trying times. We thank you all for your desire to help us to combat this terrible disease and the impact it has on families and communities.
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