On March 17, 18 and 19, I was in Cincinnati for a DIPG symposium and gala held by The Cure Starts Now. The weekend started out hectic. I missed my flight and had to go to Chicago first. But while I was there, I got to eat at Il Molino, which was one of the restaurants Cristian loved to go to with me in New York and Puerto Rico. I made it to Cincinnati the next day and attended a meet-and-greet with DIPG parents and doctors. I am so glad I went. I got to meet so many other DIPG parents whose stories I’d read about on the Yahoo and Google DIPG groups. I knew about their journeys, from the day their child was diagnosed to the day they earned their wings, so it was almost surreal to meet them in person. They all knew me though. They told me how much they loved the foundation’s website and the billboard. I realized that the Cristian Rivera Foundation has made an impression on the DIPG community because they’ve followed the work we’ve done and they know everything about it. This fuels me and pushes me to work harder because I know there are so many parents relying on me to make a difference.
It was such an amazing feeling, but nothing like what happened when I met Dr. Oren Becher of Duke University. He came over to me because I look like my son and he recognized me. He used to see Cristian in the clinic when he was still with Memorial Sloan Kettering. And then he gave me the best news I’ve heard in a long time. Cristian’s tumor, which we donated after he died, has given them some of the only cells usable in research! They’ve been able to make unbelievable progress using his tumor cells, using all of the modern technology available to sequence every gene in his tumor. Dr. Becher said only 10 samples in the world have been analyzed in this way. Now that they know everything there is to know about Cristian’s tumor, they’re analyzing the data and will hopefully be able to figure out what about the tumor makes it grow.
Saturday started with DIPG parents and doctors together on one room at a symposium. When it was all said and done, the DIPG doctors from the U.S. and Europe agreed to work together and share their knowledge so that they can maximize their research and no efforts are duplicated. That night was the Once in a Lifetime Superheroes Gala and Auction. The Cristian Rivera Foundation was a big part of that because we donated a lot of great items for the live and silent auctions. We gave them baseballs autographed by Nolan Ryan and Rod Carew; a photo signed by Yogi Berra; basketballs signed by Anthony Mason and Luol Deng; a jersey signed by soccer player Jay Hernandez and a ball signed by his entire team, the San Jose Earthquakes. That’s not even all. We also donated restaurant visits for two New York City trips and a hotel stay for one of them, which earned $3,000 in the live auction. The weekend ended with a DIPG parents’ breakfast on Sunday morning and I was headed back to New York.
It was really a great weekend. It felt so good to be around so many great parents, even though we were brought together by a terrible disease. Everyone’s story was amazing and so emotional, and I was glad to be a part of it.
John “Gungie” Rivera
Forever Cristian’s Daddy