Day 29!!!

So we made it to day 29, but to be honest it is a little bitter sweet. We are happy to have made it to this point, but things don't seem to be headed in the direction any of us had been hoping.
We hadn't updated in the last two days because emotionally I think we are just trying to take a lot of things in. The Dr's have started preparing us for some bad news that they think we will be getting. They have a theory and they want us prepared for it. Avarie's white blood cell count and platelet counts continue to drop. They told us this is actually not normal at this point in treatment. Her numbers should be going up at this point. The chemo should be killing off all the leukemia and her marrow should be making healthy new white blood cells. So far her blood tests are not showing that. They think that there is some other leukemia mutation going on. Its still ALL leukemia, but back when we were waiting for all that genetic testing they think that there was maybe one of the bad genetic things there that was just barely present so they didn't find it, but now that they have been killing off all of the easy to kill leukemia they think that bad mutation has taken over and multiplied. Everything seems to support this idea, and they will do the bone marrow biopsy tomorrow to confirm this. We probably won't know the results until Friday though. Even then we won't know the extent of what we are facing for several weeks after, they will have to do more genetic testing to discover what it is we are facing. So more then likely Avarie will be going into the "Extremely High Risk" category and will be undergoing a much more intensive treatment plan. They say her chances remain about the same, that is the good news, however it is going to be a lot more difficult and a lot more hospital stays. Honestly I don't even know what to expect completely, I haven't asked. I plan to ask tomorrow, I just wasn't ready to ask yet, but I think I am now.
She has also started running a fever tonight, one of her old bone marrow sites came open the other day and started to bleed due to her extremely low platelet count and has now become infected. They have started her on an antibiotic for it.
The good news today was that she didn't have pneumonia, they did x-rays because they thought they heard something in her lungs,but they came up clear. That was such a huge relief, because I just don't know if she could have fought off pneumonia, she is just too weak and her counts are just too low to fight anything. I am so happy to have that be clear and I almost feel I can face everything else.
When I am able to find out more info tomorrow I will update with the latest info that I can. Some of this is unfortunately just going to take time to figure out. That can be so frustrating sometimes because we just want answers now, we just want our baby back now, its had to be patient and watch your daughter suffer. I am definitely learning to be her advocate and speak up. It is amazing, the longer we are doing this and the more I learn the more confident I am with speaking up and making sure things are being done for her.
We'll update soon.