Today marks three and a half years since my son Cristian left me for heaven, and today I’ve had to say goodbye to another person I love. This morning, Wednesday, July 25, 2012, my grandmother, a woman who raised me as a child, passed away after five years battling with cancer and dementia.
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.
January has always been a difficult month for me. Cristian was diagnosed in January, on the 21st or 22nd of 2007, and Cristian passed away on January 25th, 2009. Plus there have been other personal traumatic events that occurred in January over the years, but already January 2012 is looking to be different.
Today Dr. Souweidane let me know that his DIPG clinical trial has finally gotten approval from the FDA. I was so happy to hear this. We’d been waiting so long for this final approval and now Dr. Souweidane and his team can start preparing for the trial. By the last week of January, he expects to operate on his first patient.
The holidays are a very difficult time of year for me because Cristian isn’t here to celebrate them. It’s hard to believe sometimes that he’s really gone. This week I received an email from DIPG parents who is going through their first holiday season without their son.
Gloria Garcia Castellvi, a friend of Juan Manuel who lost her little girl Alicia to DIPG, came all the way from Spain to see me on Tuesday, December 6. Gloria is very involved in the DIPG community in Spain and hosts a DIPG symposium there every February.
Yesterday, Saturday December 3, was the first ever Cristian Rivera Foundation Paintball Tournament at NYC Paintball in Long Island City . Committee Member Robert Vazquez organized the event, which was not only a big success but also a lot of fun. Team AVS
With great sadness, I announce that Heaven gained another DIPG Angel on Thursday November 17. Jordan Malave passed away at 6:30 on Thursday morning, bringing to an end his three-year battle with DIPG.
My heart is heavy with news that two DIPG angels earned their wings, not only in the same week but on the exact same day. Octavio and Madi lost their brave battles with DIPG, leaving their parents with indescribable pain and anguish. It’s so frustrating for me to read those emails.
This weekend I received devastating news from Puerto Rico. My 17-year-old godson, and JC and Cristian’s godbrother, Joshua Melendez had his life taken much too soon. He was such a great kid with so much talent. He was very special and my heart goes out to him.
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