Originally posted on The ChadTough Foundation’s Facebook page.
Bittersweet moment. The results of phase 1 of this trial bring hope … but unfortunately it wasn’t enough to keep Chad here with us. Jason and I are proud that Chad was able to participate in this trial and we are forever grateful to Dr. Mark Souweidane for his dedication to the research and for loving our little boy.
We are also proud to continue to support his work through The ChadTough Foundation. For all of you who have given, you are a part of these findings and you will all be a part of his work as Dr. Souweidane moves forward with phase 2 of this CED trial. This is a marathon and not a sprint and we thank you for running beside us!
We thought you would enjoy reading the email that Dr. Souweidane sent before the publication. You can feel the love in his words.
Dear Jason and Tammy:
It is of utmost importance to me that you are the first to know. You so bravely entrusted me with the care of Chad, and his participation in the first-ever DIPG clinical trial using convection-enhanced delivery has resulted in some highly anticipated news:
The results of our Phase 1 dose-escalation study of convection-enhanced delivery (CED) are to be published in the Lancet Oncology this evening, and they are truly groundbreaking.
Including your beloved Chad, twenty-eight children were treated over the arduous course of five years. As a result, we have been able to provide irrefutable evidence that validates convection-enhanced delivery as an efficient method to deliver drugs directly into DIPG tumors with no systemic toxicity.
This has been highly anticipated by the families of our trial participants for a very long time, I know. Please believe me when I tell you that I have held your child so close to my heart every step of the way, and I have gone gray (literally) over the painstaking process required to get here. Every trial participant, every family that trusted me, every financial supporter, every dedicated hour from our lab team, every ounce of physical and emotional support received, has been part of something very important. These findings will enable and inform progress toward new therapeutic approaches for children who are diagnosed with DIPG, this is my promise to you.
While this long-awaited accomplishment has brought a sense of relief, that doesn’t mean I have any intention of exhaling until a cure is found as a result and your generous contribution from the ChadTough Foundation will enable the next phase of this trial to move quickly. I assure you, this is only the beginning.
I thank you for taking this leap of faith, and I hope you know that the memory of Chad is with me every single day as I continue on this journey.
With deepest thanks,
Dr. Mark Souweidane
Mark M. Souweidane, MD, FACS, FAAP