His last “First Day of School”

This is the last “First Day of School” picture I will probably ever take. It was taken one year ago when Hollis was still alive and we had a relatively “normal” life. The past couple days I could not bring myself to look at all the happy first day of school pictures on Facebook.  I decided I wouldn’t surf the social media page like I usually do throughout the day.  It was just too much to bear seeing all of Hollis’s friends going on with their lives without him.  Not that it is their fault and I hope they had amazing first days, but I am just not in a place to see it.  Sunday as I sat in church I could barely hold back the tears just feeling disappointed in the outcome of our life.  I still had so much hope for my future just one year ago, but so much can change in the blink of an eye.

The past 7 months have flown by without Hollis and it still seems surreal that he is gone.  At times the waves of loss seem overwhelmingly real and the pain so raw I can barely breathe.  Other times it feels like a dream and maybe he never really existed.  I look at his pictures and try to remember what he was like in real life.  I still can’t believe we really went through all of this and are able to talk about it. I thought for sure I was going to go completely crazy when he died and not be able to function at all.  Sometimes I feel like a traitor to him that I didn’t do that.  All of these thoughts, and so many more, run through my head throughout the day and sometimes all at once.  It’s a miracle I can ever focus on anything and get work done when this hurricane of thoughts is roaring through my head constantly.

So, yesterday instead of dressing Hollis up in new back to school clothes and walking him to his class, we had a meeting with an amazing team of researchers at TGen (Translational Genomics Research Institute). Although there have been delays in the research they are doing on Hollis’s tumor, they are still working diligently to discover how the immunotherapy treatment he received worked.  Since he died so very quickly we did not have a chance to fully discuss the tissue donation with the pathologist at Phoenix Children’s Hospital.  With a limited turnaround time for tissue removal, everyone worked as quick as possible to get it extracted.  Later, the researchers at TGen discovered there may not have been non tumor tissue removed for comparison.  This was horribly upsetting to us to think the last promise we made to Hollis may have been compromised.  However, after further hard work by the researchers, they were able to find viable healthy tissue and the research continued.

Words like liquid biopsy, proteogenomics, phosphoproteomic, and transcriptomics were discussed and we pretended like we knew what they were saying.  The wheels of progress in the research world move at their own pace and take time.  However, we are still committed to working with this amazing team and moving the needle in ground breaking research and treatment for DIPG.  Our promise to Hollis and them was to help fund a promising DIPG trial.  While the pieces are starting to fall into place, we probably won’t have specifics until the end of the year.  We continue to raise the money so it will be available when needed.  Almost every day we hear of another person killed by DIPG, so we can’t give up but push forward for progress.

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