The past week has had a lot of ups and downs, but one thing has remained constant—my quest to cure DIPG. Everything that has happened this week has reminded me of what I’m fighting for and how important it is that I never waiver in my quest. A little boy in Massachusetts died on Friday. His name was JuJu and his mother had only recently reached out to me, so sadly I never got to meet either of them while JuJu was alive. On Tuesday I went to the wake and the funeral. It was so incredibly sad because JuJu was only three years old and yet he had suffered so much. I also got to meet another DIPG parent named Juan Manuel. He is from Spain and his daughter Lucia had been operated on by Dr. Mark Souweidane abroad. Juan and I were both at the DIPG Symposium earlier this year but our paths didn’t cross. He and Dr. Souweidane had spoken about me and Juan wanted to meet me. That finally came to be on Thursday when we talked on Skype—the first time I had every Skyped in my life!—and then on Monday when he flew in from Spain to meet with me. He came by my office for an hour and then we went to eat at Il Molino. We shared stories about Cristian and Lucia. We embraced each other and cried together. We had an amazing connection even though we’d only just met and we plan to work together. Between JuJu’s passing, meeting Juan for the first time and having felt that amazing spiritual encounter with Cristian on his birthday, I am reminded over and over again what this fight is all about. I’m glad the gala was so successful because it means I can be a part of something so great that touches so many lives, and even saves some too.
John “Gungie” Rivera
Forever Cristian’s Daddy