Keian has been extremely tired this week and I've been noticing he has a similar appearance to when he was first diagnosed during his inital week of chemo- his eyes appear slightly sunken and their colour has seemed to take on a darker hue. He has been spending our outings sitting in grocery carts with his head resting on a blanket and he has been asking for us to carry him alot. Even tonight, he said that his back hurt too much to walk to the bathroom without help.
He's been asking alot more questions this week about his illness and hospital stays. I think that with all of this, he dislikes being away from home the most - that would explain the fact that he's been wanting to stay close all week. As we cuddled before bed one night, he told me "I don't like being sick, but I'm really excited!". I asked him why and he responded with "Because when Joren helps me, I'm gonna be all better and then you'll have back the old me!". It's times like these that just rip me to shreds. I'm trying to be the most positive I can possibly be for him, but many times that negative is just creeping around the corner waiting to pounce. Right now, I have to focus on just that...the right now. If I start thinking about the what if's or the possibilities or complications then I can't be the strength that he needs to get him through.
Today was an early day at the clinic - his first triple intrathecal chemo since relapse and day 8 of the re-induction protocol. Goal=get him into remission during the first 30 days of re-induction.
Our news of the day - Results came back on Keian's MRD test (Minimal Residual Disease). This was to determine if he had an isolated CNS relapse or if this included the bone marrow. He was negative for the bone marrow relapse! In order to be considered a positive, you would have above 5% blasts (leukemia cells) - Keian was sitting at 1-2%. What the MRD determines is the cellular level of these blasts that are seen. After reaching remission in August, his MRD level was sitting at .08, which moved him into the "intermediate risk" category. His MRD results this time, were sitting at .6, so it has increased. Likely, he was on his way to a full relapse in the bone marrow as well, but it was caught before that came to fruition. This means that he will fall into the 45-50% category for him to achieve remission and for it to stay there. Albiet not perfect, it is a far cry from the 15-20% that it would have been if bone marrow relapse was involved. Last week the leukemia counts in his CNS were nearly 300. After just receiving a call from his Oncologist, we were informed his counts from today's lumbar puncture revealed that he is sitting at about 1 in the smear! Likely that means his total count would be close to about 10. In one week, the number has gone from nearly 300 to 10! She did tell me that they weren't expecting it to happen that quickly. He is not in remission...yet, but she seems quite hopeful that he will achieve that within a couple of weeks. What an amazing Christmas gift that could turn out to be!!!
I keep repeating to myself that if one good thing were to come out of this, it's Joren's ability to help Keian. They've mentioned to us that there have been families of 5 or 6 that don't have a match atall. They're also hoping that Joren's healthy cells will act as a natural chemo and fight his leukemia cells. It will be a very long few months, and even longer recovery, but once again, he shows us his strength and the fight that he strives for every minute of every day. Everyone asks me "How do you do it? How do you stay so strong?". My answer would be "How do I not?" This isn't about how, it's about why. And right now, my "why" is laying snug in his bed next to me.