Wednesday, November 20, 2013
Life with Leukemia: Or is it?
Monday was our weekly (more like bi-weekly) visit to Huntsman. It was an early appointment which we soon discovered was a big mistake have you seen me in the morning? It’s not pretty. Neither of us enjoyed getting up that early.
It was pretty routine.
Labs drawn, by a nurse who isn’t brand new. Poor Tyler kept getting the newer girls who aren’t quite as smooth with that needle. It’s no biggie, but a painless prick is worth something to him. One of our very favorite nurses every time my hair is in a bun I think of her came out to see me in the waiting room. She switched jobs and is now working in our clinic! We couldn’t be happier. That made my visit!
They took us back for the actual doctors appointment so fast. We usually wait much longer. The waiting room was bumming me out so I was happy about that. We were seen quickly, so quickly in fact that the RN (she’s not an RN, maybe just a nurse… or a PA… or.. I don’t know) and Dr. D came in at the same time. Now that NEVER happens. But of course I’m sure they were just both so anxious to see us, who wouldn’t be? Dr. D left and came back a little later.
I appreciate the humor of highly educated nurse(?) R. She is quick on her feet with retorts to our ridiculous statements.
The results from Tyler’s bone marrow biopsy were back. In easy to understand words NO TRACES OF CML WERE FOUND! They refer to this as a complete molecular response. For those of you wondering, he still has CML, but the medicine is doing such an amazing job it can not be detected in the marrow. His body is amazing. We are soooo grateful for the huge strides it is making in healing itself.
We were out of the office by 10:15, got his refill which came to a grand total of 0 dollars by some strange miracle by 10:30 and were headed home. Well, not quite, I always insist that we visit the gift shop. They were setting out some colored bracelets you know the ones so we picked up a couple of orange ones (that is the color for Leukemia). I may have wished, just for a second, some Carcinoid Cancer no idea what that is on my husband so I would have a reason for a zebra striped bracelet. Did you know that the color for Brain Cancer support is grey? Kinda sad…
The only side affect Tyler has from this new medication is a small rash, that really is only there in appearance. It does not itch or burn or anything. He’s a lucky dude.
We won't have to go back up to Huntsman for 6 weeks. I’m almost not sure how to handle that! Is it weird to think that I may miss the hospital?
In other news, I have put up my Christmas decorations. Each of you who just rolled your eyes at me are welcome to judge, but I don't care, I love it (name that song). The past two years I haven’t really had the energy or desire to get them all the way up, so as soon as the decorating bug hit, I took advantage of it.
Sawyer started nursery 3 weeks ago. Maybe I’ve mentioned that… I can’t ever remember. But he loves it, especially the bubbles at the end. I’m so grateful for wonderful nursery leaders who care for him and make it a blast. I’ve never had my kid so joyful at the end of church. He will wave and blow kisses to just about everyone as we leave the building.
The tantrums have thankfully slowed down Sawyers and my own, although we did have a melt down over not being able to snuggle a cup of milk that one was Sawyers. He’s like a little sponge these days, copying and repeating everything we do and say. It’s a super fun and exhausting age.
Being a mom is great. We have a lot of fun. Each day is new and different, some days are easy and exciting and some days like today I sit on a diaper full of pee that has been left opened on my kiddos bedroom floor probably my own fault. Some days I am overwhelmed by the amount of hugs and kisses this little angel gives me, and some days I have to sit him in time out for biting Cooper or Lexi and leaving a bruise but for some crazy reason Lexi thinks it’s only means he loves her more.
I am blessed with wonderful friends who will let me be at their houses or come sit at mine. I am happy.