Today Dr. Souweidane let me know that his DIPG clinical trial has finally gotten approval from the FDA. I was so happy to hear this. We’d been waiting so long for this final approval and now Dr. Souweidane and his team can start preparing for the trial. By the last week of January, he expects to operate on his first patient. This is so amazing. Dr. Souweidane is one of the best DIPG doctors in the world and I have so much hope that this trial will lead us to a cure.
But as is so often the case, this amazing news came with terrible news at the same time. Valentina Bravin, a beautiful 4-year-old girl who has been battling DIPG, was hoping to be a part of Dr. Souweidane’s trial. I’ve become close to her parents this year and I was pushing for that as well. But the trial requires patients to be 2-14 weeks past your last treatment of radiation for the procedure to be effective, and Valentina missed the cut off by only eight days. My heart sank when I heard this. I spoke to Valentina’s father later on in the day and it was such an emotional conversation. There are no words to describe how it feels to see an opportunity like this slip away from your child. So while I am glad we are on the road to saving lives, I can’t help but feel sad that Valentina won’t be a part of Dr. Souweidane’s trial. Dr. Mark Souweidane and I will help her parents with anything we need to do to secure a spot on other amazing trials which are being done by other outstanding facilities.
John “Gungie” Rivera
Forever Cristian’s Daddy