Thursday 14th of June 2012

It’s been a long time since I last had the chance to write in this journal and so many amazing things have happened since then. I am the associate producer of a play called DC-7: The Roberto Clemente Story, which played at Cristian Rivera Foundation Committee Member Miriam Colon’s Puerto Rican Traveling Theatre. The play was a great success in New York and now we’ve decided to bring the production to Puerto Rico August 16-28 of this year. One of those nights, we will have a performance that’s dedicated to the Cristian Rivera Foundation. We did a similar charity performance during the New York run on Thursday March 22 and we raised $10,000 for Dr. Souweidane and his research. We were able to give him so much more this week after a successful fundraiser event at Zylo Tuscan Steak House in Hoboken on Wednesday June 13. Committee Member Andy Epstein organized the event with Zylo manager Kevin Hayes. The event had great food and drinks, entertainment from Sinatra Idol winner Eric DeLauro and Tyler Reid and Stevie G, and very successful live and silent auctions with great memorabilia from people like New Jersey Devils Captain Zach Parise and the Cake Boss. We raised $55,000 that night. It was amazing. I really appreciate everything Andy did to make that night possible. I have been so busy with Babalu that I haven’t had the time to do many of the things I want to do for the foundation, including the symposium in Spain this past February that I was so sad to have to miss. So I hope that other committee members will step up like Andy has and get creative in ways I’m just not able to right now. We are getting so close to a cure that we can’t stop now. Dr. Souweidane operated on the first patient in his clinical trial on May 1—a beautiful 4-year-old girl who Dr. Souweidane said tolerated her surgery like a true champion. I was so happy to hear this news. When Cristian was first diagnosed, DIPG was inoperable and now there has been the first operation on an inoperable tumor. If that doesn’t give us hope for a cure, I don’t know what will. The little girl’s mom had posted on the foundation’s Facebook page while her daughter was in surgery to thank us for everything we had done to make that moment possible. That’s why I started this foundation and that’s what we have the power to do. Dr. Souweidane told me that the only thing standing in the way of a cure is money. We can break down that barrier. I know we can and I know that we have to, because cancer is a horrible thing—all kinds of cancer, not just DIPG. Cancer takes away the people we love much too soon. I miss Cristian so much. I remember going to Central Park with him in the Spring and Summer, especially the Victorian Gardens. And it destroys me when I read of a new patient when their parents sign up on a Yahoo or Google DIPG group because I remember the feeling of knowing time is slipping away with your little boy or little girl, and trying to do everything you can to keep them alive and make their remaining time on Earth happy. I can’t wait until this is all over and a diagnosis of DIPG doesn’t mean any more that a child has to die. I will never stop working until that day comes.

John “Gungie” Rivera
Forever Cristian’s Daddy