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. They asked how can they go on and celebrate Christmas with their daughter now that their son has passed away. Their daughter even showed them her Christmas wish list, and the number one thing she asked from Santa is to bring her brother back.
It’s heartbreaking to watch these families go through this, and it made me even sadder because of a conversation I had with Dr. Mark Souweidane. He hasn’t gotten the definitive approval yet on his trial. I have become very close to Valentina Bravin’s parents since I met them before the gala and I was hoping she would get a spot on the trial, but in order to be eligible, you have to be 2-14 weeks past your last treatment of radiation. For Valentina, that cutoff date is somewhere around January 6. Even if Dr. Souweidane got approval today, he would need 3-4 weeks to prepare for the trial, which cuts it very close for Valentina. I had the terrible job of calling her father, Eric, and breaking the news. It was such a difficult conversation and one I wish I never had to have.
It’s my Christmas wish that we find a cure for DIPG so I don’t have to receive any more of these emails or make any more of these heartbreaking phone calls. I just wish that one had come sooner so that Cristian could still be with me. I still keep Cristian’s room for him and it’s usually nice and neat, but with taking things in and out for the gala it has gotten messy. But lately I just can’t bring myself to go in there and straighten up. I’ve tried over the past three weeks but it’s so hard, especially at this time of year. I miss him so much. I went shopping for him the other day. It was the first time I’d been in the Thomas the Tank Engine section of the Times Square Toys R Us since I went there with Cristian, and that was three years ago. I got so emotional looking at all the new trains that have come out. I knew Cristian would appreciate them. I bought him lots of gifts, a few movies, and I’ll place them under the tree for him before moving them into his room. I also bought some Thomas ornaments this year and this weekend, I’m going to buy a beautiful bow and angel to put on top of the tree.
John “Gungie” Rivera
Forever Cristian’s Daddy