A few weeks ago, I met another little boy with Pontine Glioma. His name is Jordan Malave and he was first diagnosed with Pontine Glioma when he was only two and a half. I met Jordan with his dad Jayson, and spent an hour on the phone with his mom, Leeana Castro. Right now Jordan is five years old and after more than two years with the tumor, he’s doing well. Amazing. It helps for sure that his family has been very involved with him and his treatment. Jordan’s been on a Cuban drug called Nimotuzumab, which sadly didn’t do anything for Cristian but Jordan seems to be doing well on it. He’s had times when the tumor was almost completely inactive. But when I met him, he was showing symptoms again. He was weak on one side in his leg, arm and hand. He also has one eye that’s turning in. Those are the same symptoms Cristian had. In fact, Jordan reminded me a lot of Cristian. He was so friendly and he’s a big fan of trains, including Thomas the Tank Engine. When he came to the office to meet me, Jordan was flirting with all the ladies here. Like I said, he reminded me of Cristian. Luckily Jordan had an MRI since then and the results came back yesterday: he’s stable. I’m so glad. Jordan is a beautiful child and everyone at the Cristian Rivera Foundation, especially me, wants to help Jordan in any way we can, however we can. We want Jordan to beat the odds.
John “Gungie” Rivera
Forever Cristian’s Daddy