So life really has been pretty great this week, sometimes tedious, but really so great. Allistaire’s energy has continued to increase and she ‘s had lots of fun out riding bikes and running around. She’s been doing an impressive job eating and has even gained some weight. She started at 15.7 kg and was up to 16.3 on Thursday when she was weighed. On top of it all there still have been no blasts showing up which is an immense relief. We are still at an ANC (Absolute Neutrophil Count) of zero – in fact it has been 26 days at zero. Quite a while to be completely without defense.
Hence this brings us to the sad news of the day. At the exact moment that the door was open to the doctors for rounds this morning, Allistaire sneezed a huge inch sized snot bubble and Dr. Fong immediately turned the sign on the door to “Viral Precautions,” which means we’re back in isolation. I have been asking a number of times in the last week about Allistaire’s occasional cough and intermittent runny nose. I certainly don’t want to ask to be put in isolation but more than anything, I don’t want to waste time ignoring an infection of some kind that could be being treated and not delaying us further from transplant. So here we are. A nasal swab confirmed RSV this afternoon and of course we are back to having to do the much detested Ribavirin again. I am heart-sick about it all, but it is what we have to do and at least this time I know what needs to happen. Amazingly, I had the best nights of sleep I have had here yet, the past few nights. I am thankful to be going into these next five days not overly tired. We have 30 hours of Ribavirin ahead of us and days stuck in the room.
God sees fit to constantly remind me that it could be worse. I was delayed going to switch my laundry this morning, by the oh so sad face of Shannon, mom of Jaxon. We first met Jaxon, who is now a little over year and a half, about a year ago. He has Down Syndrome and AML. He has been fighting health struggles from the beginning of his wee life and today they are bringing him home with the very slim chance that he’ll make it but with the reality that they probably have days or at most weeks with him. After crying in the bathroom for a bit this afternoon, I tried to compose myself and as I walked down the hall I passed a man I knew mostly by face. I’ve seen him around quite frequently over the last year plus but just spoke with him for the first time last weekend. His daughter was born in liver failure and had a liver transplant at one year, then got Acute Lymphoblastic Leukemia and then relapsed and had a bone marrow transplant last fall. They are still here. If I have to sit next to Allistaire in the dark for six hours each day for five days with a mask over her face, then I have it better than I could.
I’m in the middle of a book that has a lot to digest. One of the main points is that we may not be able to change our circumstances, and thus in some ways are without choice or power, but the truth is we do have the choice to decide how we will respond to suffering. Realistically this is quite minor, though it sits amidst larger, more significant pain and sorrow. But regardless, I can mope around about this, and boy is it tempting because the truth is it just really sucks, but I’m asking God to help me face it with thanksgiving and confidence that He will get us through.
Today marks our 40th day in the hospital since we have returned with relapse. Tomorrow will surpass the longest stretch we’ve ever had in here before. There is no end in sight. I meditate on this: The Lord is God. The Lord is Good.