Starting the new Chemo

Avarie started the new chemo yesterday. It seems to have gone ok, at least there were no allergic reactions from the drugs, they worry about anafalactic (not sure how to spell that)shock, but she was ok, no allergic reaction. She continues to run high fevers from her infections though, I am hopeful that today the antibiotics should help her turn the corner. Yesterday her blood work showed that her immune system was completely nonexistent. They track a number called her ANC, it shows how prone to infection she is, or whether she can fight an infection. Anything under 1500 means that she can't fight off an infection very well, and under 500 is grounds to put her in the hospital as a precaution, Her ANC has continued to go down but yesterday her ANC was actually 0, she literally has no immune system right now.
I came home last night to spend some time with my other kids. That is one of the hardest things for me is trying to balance that. The baby was so happy to see me, he hasn't left my side. The other kids are struggling too, Addisen was in tears last night when I told them that Avarie wouldn't be coming home as soon as we thought and Mommy was going to have to go back up there. I know I have to balance this out a little better, it's just hard, I am truly needed in both places, but I can't be in both places at the same time. I just have to start taking more time off from the hospital and coming home, its just so hard.
I'm not sure how Avarie did during the night last night yet. I haven't heard from Craig yet this morning.
They explained a lot about these new chemos to us yesterday. They're kind of scary drugs, but there is not really any other option, she has to have them. Also she will have to receive radiation to her head. She doesn't have to right now, but she will in the next month or so. They haven't given us an exact date on that yet. The radiation will just be to the head not the whole body. The reason behind that is that the brain is great at protecting its self. And all it takes is for one leukemia cell to hide out in the brain and survive into remission and we will be right back here again, only that time we will be looking at a Bone Marrow Transplant. We don't want to do a transplant, that is a last resort if everything else fails. It is very scary and has some very bad side effects like never being able to have a baby of her own, it would kill her reproductive system. There are a lot of other risks involved too, so we want to avoid that if we can, but if it means saving her life then that is what we will do.
We found out that this cycle of chemotherapy is 21 days. So yesterday was Day 1 of this cycle and then 21 days from then they will do another bone marrow biopsy and we will find out if she is in remission. If she is not then she will become a candidate for the Transplant. From my understanding that is the next step. She is on the "kick your butt drugs" right now according to the Dr's. So hopefully this works.
I'll update again tonight from the hospital when I go back up and get a feel for how she is handling everything then.
I know when a lot of you read this you are going to offer to go and stay up at the hospital with her. And thank you, but honestly right now that doesn't really help, there may be a time when it will, but right now there is so much going on and new information that it is important for me to be there learning it. The more I learn and know then the better advocate I can be for my daughter, and I truly understand that statement now about being your childs advocate. I have had to do that many times now and I am so grateful that I have learned what I have to be able to make those decisions. So for now it is important that I am there. And at home we are trying to keep things as much of a routine as we can. We have been having either Daddy or Grandma's come and stay with them. I am hopeful that we can keep it that way. I think it is the best thing for the kids to have as much of a routine as possible. But there again, there may be days when Grandmas and Daddy aren't possible to be there and we will need additional help. I promise I will let you all know when we need that. Right now meals and prayers are about the best thing I can say to do to help. Oh, another way to help is let us know if anyone knows about a great deal on a mini van. We are trying to get one, because we can't put Avarie into our current car at all now with her immune system. We have to find a new van. So the money that we have been trying to raise will go to help with that, but so far we're still searching for one we can afford.