At the Weill Cornell Pediatric Brain and Spine Center, we are always amazed and inspired by the courage shown by our young patients and their families. Although we treat brain and spine conditions in children every day, we understand these are frightening, life-changing events for families. They affect not only the patient but also the parents, siblings, grandparents, aunts and uncles, cousins, classmates, teachers, and everyone else who loves a child whose health is at risk. As these children and their families soldier on through surgeries and other treatments, we are inspired by their bravery.
Every so often, however, a child and a family stand out from the rest. In circumstances so frightening, with a diagnosis so challenging, they step up and take the most intrepid path on an already difficult journey. That’s why we established the Rainbow Award, honoring an individual who looked bravely through the storm to see the end of the rainbow, who took on challenges with dignity and courage far beyond their years.
The very first Children’s Brain Tumor Project Rainbow Award honors Caitlin Presley Downing, a 5-year-old Florida cheerleader unexpectedly diagnosed with diffuse intrinsic pontine glioma (DIPG). Caitlin’s devastated family knew the odds: DIPG is not only inoperable, it is incurable with either chemotherapy or radiation. Treatment can temporarily erase the tumor and alleviate symptoms for a few months, but the tumor is persistent and always returns to claim the child’s life. Since the tumor is so rare, it does not receive major research funding, and the odds of survival remain at zero. But in 2012, Dr. Mark Souweidane of the Weill Cornell Brain and Spine Center began a clinical trial testing an innovative procedure that created new hope. The procedure is an interstitial infusion that delivers tumor-fighting drugs directly to the DIPG site, bypassing the blood-brain barrier that makes chemotherapy so ineffective. Laboratory research suggested that the process would be safe, but it had never been tried in a patient. Dr. Souweidane invited Caitlin Downing to be the first participant in the trial.
Caitlin and her parents knew the procedure was untested, and that she would be the very first to undergo this surgery. They knew what the course of the disease would be without it, but that the outcome of the surgery was not assured. They knew this new procedure was in the earliest of stages and was unlikely to change Caitlin’s outcome. But with courage and hope, and with an eye toward future children who might one day be saved because of this trial, they agreed that Caitlin would participate.
An MRI scan performed four months after the trial confirmed what Dr. Souweidane had predicted and what the Downing family had hoped: The infusion had successfully attacked the tumor cells. As Caitlin’s mom, Denise Downing, put it, “It works. Yes, it does, it works.” But although Dr. Souweidane’s infusion had been successful, the MRI also showed regrowth of the tumor in a new location. The next scan showed significant progression of the disease, and Caitlin passed away on November 11, 2012.
Dr. Souweidane is hopeful that this trial will provide some answers to the mystery that is DIPG. But he's certain of one thing: No family was ever braver or more dedicated than Caitlin Downing and her parents. "In nearly two decades of being a neurosurgeon, I have seldom if ever been moved by such emotional investment and trust with patient and parent," he said. “That’s why I’m so very proud to present this first-ever Rainbow Award to Caitlin. I so wish she were here to accept it herself. Caitlin’s drive to defeat her tumor and her family’s courage in the face of a terrible diagnosis helped to advance this important work. I’m confident there will come a day when a child diagnosed with DIPG will not have to face it without hope. Caitlin’s courage will be the force that creates that hope in future children and their parents.”
The Rainbow Award is being presented at the second annual New York “Moving Towards a Cure” 5K/10K event, presented by Miles for Hope. The Weill Cornell Pediatric Brain and Spine Center is partnering with Miles for Hope in a joint effort to raise awareness and funding for brain tumor research. This year’s Miles for Hope event in New York is being dedicated to Caitlin.
