Updated: Sep 2, 2019
And just like that, it’s May again.
May 1st, to be exact. It’s 2018. But, as I sit in the airport, late at night, with an extremely delayed flight, I am left to contemplate my day, and the May 1sts that have come before.
Today, I sat in a room with 15 other families. We held a common bond; our children have all been diagnosed with rare pediatric brain tumors. We also all support and encourage the research currently being conducted by the Children’s Brain Tumor Project at Weill Corner Brain and Spine Center. We listened intently as we received updates on the cutting-edge research being performed by Dr Souweidane and Dr Greenfield and their teams.
It was a good day; an emotional day, but a good day. It started with the ability to stand with three other families, and on behalf of the Children’s Brain Tumor Family Foundation we were able to present a check for $125,000 for research into how to treat brain tumors that steal the lives of children. That check is possible through the support and love of many families, many of whom have supported our sweet Cheering for Caitlin, and continue to remember the short, impactful life she had.
Then, my mind drifts, as it has all day, to another May 1st. This May 1st, sunk deep in my memory, is in the year 2012. Yes, 6 years ago today Caitlin was oblivious to the contribution she was making as the first patient in Dr Mark Souweidane’s CED clinical trial. We waited as she spent hours (so.many.hours.) in the OR for that surgery. The same day SO MANY of you showed your support by wearing pink and purple as she entered that operating room so early in the morning. We were thrilled in the days and weeks and months that followed as she showed no signs of toxicity and her scans showed positive results.
Six years ago…life has gone on, time has gone on, and with that comes change. Change in the form of treatment, success, new phases to trials and new approaches. And yet, quietly, I celebrate the impact Caitlin has had, the progress that has been made, and the closer we get to the day when a child will survive the diagnosis of DIPG.
I am proud. I am happy. I am impressed. I am grateful.
For the physicians and their research, for the supporters and their love, for Caitlin and her courage.
Denise Downing, Caitlin's Mom