Three Days Left Until Day 29!

I want to start this post with the happiest thing that has happened to me in over a month. Around 4am Sunday morning I as awake with Avarie changing her and helping her, she had her eyes closed and then said "Mom, I love you!" She then gave me this tiny little smile, that honestly I wouldn't have known was a smile except she told me "I just smiled for you." I needed that so much. She won't let me touch her or love her at all right now, so to be able to have any connection with her is great, but to have her do that lifted my spirits. It felt like the first time your child tells you they love you, or the first time they smile when they're tiny and you know that smile was for you. It has lifted my spirit and given me strength to keep going.
They told me to plan on spending those next three days here. But day 29 is just around the corner. They broke down for me what they exactly looking for and what will happen in the different scenarios. The first senario and the one we are hoping for, is that the bone marrow biopsy shows less then 5% leukemia in her bone marrow. They will consider that remission and she will then proceed into what is called "Standard High Treatment". The high is because she is a slow responder, this is the best case scenario right now, it is the one we want. The second scenario, this one would be ok, but not the one we hope for, would be if they found more then 5% but less then 13%. The 13% is because that was the official number of leukemia still found in her marrow the last time. So as long as it has continued to go down then they will keep her on her current chemo schedule and just give her two more weeks of the same and then re-evaluate at that time. The third scenario the one we really don't want, is for them to find 13% or more leukemia in her marrow. In this case she would then move into a whole new category. She would no longer even be considered "Standard Risk", she would move into "Extremely High Risk" and we would have to plan on pretty much living in the hospital for the next 6-8 months. I am not sure what pretty much live in the hospital means exactly, but it was pretty clear we would have a permanent second home for awhile. As opposed to only coming in for treatment or when there was a problem. So these are our three options right now, not that something else couldn't come up and throw a wrench in it all, but these are the three most likely possibilities.
Today has been a slower day. Its the weekend, so there is no physical therapy or occupational therapy, its just kind of a hang out and deal with anything as it comes kind of attitude. She did get a platelet transfusion today. I was curious what platelets looked like, just incase any of you are too, they are kind of orange looking. I think I expected it to just look like blood, but no it kind of looked like watered down orange juice. Because her platelets were so low a couple of her scabs from different procedures over the weeks had started to bleed, but they seem to be scabbing up tonight. Her new platelets are doing their job.
Its amazing the stuff you learn living through this and being here. I wish it wasn't under these circumstances that I was learning all of this, but its all so fasinating and it really helps to try to learn as much as you can. It gives me a sense of some control over what is happening to my daughter. The more I learn and understand the better I am at trying to help her and make decisions for her.