One Month

One month ago today, I held Matthew in my arms and watched as he took is last breaths here on Earth.  I can still see his face, hear the breathing and feel his hair as I stroked his head.  I can remember as he took is final breaths telling him "it's ok...fly free buddy...it's time for you to go now.  We will be ok."  I can't tell you how many times I told him that we'd be ok during those last days.  Not because I believed it, but because I knew he needed to think we'd be ok once he was gone.

Here we are.  Twenty-eight days later.  I feel like things are getting harder as time goes on.  The fog is lifting and the pain is more evident.  This pain is unlike anything I've ever experienced.  It's a physical hurt that's so primal it cuts straight to your core.  It is with me all of the time, every single day.  Sometimes it's just a slight current and sometimes (like today) it's a tsunami.  I miss Matthew more than I thought possible.  I knew this would be hard, but on days like today, it's just unimaginable and unbearable. 

I've struggled this past week with the details surrounding Matthew's last month.  When he had his MRI on September 30th, all we knew is that his tumor had grown.  There was also an additional area of concern in his left frontal lobe that we talked about, but didn't discuss too much.  Every other visit, I would read his MRI report immediately, but that visit they didn't offer us the report, and I didn't ask for it.  This week, I asked Cory to email me the report.  Let me just say, I'm SO glad I didn't read it in September.  Nothing good would have come from it.  The area of concern in his left frontal lobe had been present in July as well and had grown at the September MRI.  We will never know exactly what it was, but it was likely another area of DIPG.  DIPG generally doesn't spread, but glioma cells can and do travel occasionally and it is more than likely what happened with Matthew.  The original tumor had also grown upward into his cerebellum, midbrain, corticospinal tracts, thalamus and hippocampus.  Like I said, I'm so glad I didn't read that in September. 

My obsession with the details of his last month also relate to his actual death and what caused him to die.  Let me explain.  I know brain cancer caused him to die, but I want to know the actual physiologic events that caused his death.  I know in my heart that we did everything possible to keep him comfortable and that he was not in pain when he died.  I also know that the decisions we made regarding his care were made with love and only his best interests in mind.  I know we did everything "right" and so my need to know the details isn't because I think we could have changed anything- I know we couldn't.  But as his mother, I simply have to know.

Today, Guru Cory and I had a good long chat about death by brain cancer.  Having lost someone close to her to cancer, she completely sympathized with my "need to know" issues and explained that she's felt that way too.  We talked about Matthew's last 24 hours and she explained several different possibilities regarding what was physically happening with him during that time.  The bottom line is, we'll never know.  Even if he was in the hospital when he died and was being closely monitored, we still may not have had a definitive answer.  So, here I am, one month later- knowing no more than I did one month ago.  I am completely confident that we made all the right choices...yet will never have the answers that I desperately want.

Tonight the tears have faded and the tsunami receded for now.  In the words of a very wise mother who lost her daughter this year "wish it were different, but it just hurts, and we cry, and we find some way to accept it, then it comes back and we do it again."

With Matthew in my Heart, Nikki

  One of the sweetest things I've ever seen.  One of Matthew's best friends visiting during his last week.  He held his hand quietly for quite some time.  Matthew was lucky to have friends like Brayden.