It’s hard to believe that it’s been a year since we lived our last month with Hollis. Where has the time gone? How have we survived this long? When he was diagnosed, I told people I would be okay as long as he was alive and I had hope, but I thought I’d go crazy and not make it if he died. However, it’s been 11 months since he died and I’m still here, the crazy part is debatable though…
Thanksgiving was definitely rough. Trying to find something to be thankful for wasn’t easy. On Tuesday 21st, we were finally able to meet with the team of scientists at TGen who have been working diligently on sequencing and analyzing Hollis’s tumor. As a Mom, my greatest fear was they wouldn’t learn anything useful from this donation which cost us so much, the life of our beloved Son. I thought of this donation as his last gift to earth, to the kids who would be diagnosed with DIPG in the future. I wasn’t sure what to expect when walking in but prayed we would somehow find even a bit of peace from the meeting.
I will be honest, much of what they said went over our heads. Most of us go about our days never thinking about how our bodies work at a cellular level! The team has now analyzed over 30 DIPG tumors and we saw the charts comparing various genetic mutations. In reality, every case was a little different from each other, as if they were all different diseases. They talked about the genetic mutations common in DIPG, how the cells are duplicating and not “switching on or off” as they should. Because there are so many different mutations with DIPG, it has been difficult for Drs. to find a common treatment option.
Hollis had many of the common DIPG mutations, however, he also had the PDGFRA mutation with D842V activator. I won’t try to explain what this is, but we were told it was extremely aggressive and rare, found in less than 1% of DIPG cases. This was quite surprising to us because he lived without the common symptomatic complications for almost 9 months. This leads us to believe the treatments we chose did in fact work, although it is hard to scientifically prove. They did not save his life, but they somehow allowed him to live unencumbered until his final days. He did not live the life his PDGFRA D842V mutation indicated he should, and for that we are thankful.
So, going into Thanksgiving feeling sad and depleted, I was thankful for the TGen meeting. Nothing will bring our sweet Hollis back, but I will always be grateful for the Most Best Days we had with him. The line graph we saw of DIPG mutations showed various life expectancy lines in different colors. The PDGFRA D842V mutation, in red, was the shortest life span of all, with a sudden dramatic downward fall, but he didn’t live that way.
He wasn’t a sad, dying red line, but a funny green one, that suddenly pointed upward toward Heaven.