Back to Reality

With Ryan's bone marrow donor tests complete, I drove him back to Connecticut Friday.  It felt a little bit like I was transporting a secret antidote in a James Bond film.  Careful not to damage the package, I took extra precautions to keep him safe.  Now we just need to keep Ryan healthy and virus free for the next several weeks while we approach transplant - also known as day 0.  It was a long drive through some  intense storms, but it was nice to spend some one on one time with him.


Carter and Cole in the Park



It was also a reminder that Ryan is at such an impressionable age and made me sad that I can't be there more for him right now.  When I told him that I was proud of him for donating his marrow to Cole, he said "Did I have a choice"?  No buddy, you really don't.    



The trip home also allowed us to watch my daughter Carter compete in the state gymnastics meet.  Watching her compete, it's clear that she is distracted by everything going on right now and not having having her mom there didn't make it any easier. 

I was able to bring Carter back with me on my return drive from Connecticut to Cincinnati.  She was happy to miss a few days of school and Cole was thrilled to have some company.  He remains relatively healthy heading into chemo, which officially begins next week.  He's a little beat up from the testing, has some swollen nodes and some white blood cells in his spinal fluid, but it doesn't appear to be related to the hot spot they found last week.  The white blood cells also don't show cancerous cells and don't show signs of active HLH, which is a good sign.  He's getting another lumbar puncture this morning to see if the white blood cells have decreased.  The rest of the week will focus on internal testing of his lungs, stomach and other internal organs.   

We had to sign permission documents yesterday which were the scariest documents any parent can ever read.  They outlined  in detail what lies ahead and mentioned the words death and fatality no less than 20 times.  While the weekend home was a nice distraction, it's back to reality here in Cincinnati.  The doctors are encouraged that he's heading into chemo healthy and hope to have him home by the holidays.