Category: Journal

Yesterday, I had the opportunity to talk with Rosemary Lora and Gabriel Villamil over dinner, who, like me, lost their child to DIPG. I first heard about their son Javier, who they used to call Buji, after Buji’s aunt Fulvia Gonzalez heard about me on the Yahoo DIPG Group and decided to reach out.

I’m looking forward to attending the Once in a Lifetime Superheroes Gala and Auction, held by The Cure Starts Now on Saturday, March 19 at the Duke Energy Center’s Grand Ballroom in Cincinnati, Ohio. I’ll be there to represent the Cristian Rivera Foundation.

Last week I received some very exciting news. Researchers at Stanford University had a major breakthrough where they were able to use tumors donated from five children—including Dylan Jewett who, just like Cristian, loved Thomas the Train—to create a model of a DIPG tumor in mice.

On Tuesday, March 1st I attended a Celebration of Life for my friend Vivian Rivera, who passed away of a brain tumor on January 6th. Vivian was so courageous throughout her life. She had already fought a successful battle against breast cancer before being diagnosed with a brain tumor.

Valentine’s Day was always one of Cristian’s favorite holidays so as much as I love him and miss him every other day, today I love him and miss him even more. I remember when Cristian was at Memorial Sloan Kettering one Valentine’s Day and he wrote out little Valentine’s Day cards for all the nurses.

It was two years ago today that Cristian earned his wings and went to Heaven. Cristian died at 6am on January 25th as I held him in my arms. No matter how much time passes, I still miss him and love him more than ever.

Last week, the world lost an amazing and courageous person: my friend Vivian Rivera. Vivian was a breast cancer survivor but a brain tumor took her from us too soon on Friday January 7.

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.

Last month, my good friend Vito Bruno produced a concert celebrating the 25th Anniversary of Freestyle at the Trump Taj Mahal in Atlantic City. He had promised that a portion of the proceeds from the event would benefit the Cristian Rivera Foundation and this week, he handed me a $6,000 check.

Each day, we lose more and more children to Pontine Glioma. It’s a sad fact that’s only made harder now that Thanksgiving is coming, with the holiday season not far behind. I got to meet even more families whose children died of brain tumors at The Mikey Czech Foundation’s Third Annual Moms For Mikey event, Comedy for a Cure.