Theres No Place Like Home!

It is amazing to have Avarie home and see more and more of her personality returning to us. It gives me hope that honestly I hadn't even realized I had lost.
She has a check up tomorrow to check blood counts. I suspect she may be low on red blood cells. She has seemed extra pale to me and extra tired, but I have been wrong on that a lot. I'm not a very good judge of that at least not yet. We've spent so long in the hospital I had her actual blood counts that they took every day to rely on. We have not had a lot of time home to be able to read all those signs very accurately yet. I hope we will start to have that experience.
The only lingering problem is her legs. She still has no use of them. We do her leg exercises every day and the right leg is a little stronger then the left, but both legs are so painful for her. She cries when they are even touched. The muscles have shortened and cannot extend all the way any more. She is going to require a lot of physical therapy. They want her to go into their rehab program at the hospital. It is a 2-4 week stay. She just has been so medically unstable that they have not been able to even consider putting her in it yet. She is still as they say "medically fragile" but she is definitely getting better.
Her appetite is great right now because she is on steroids again. It is great to have her eating so much, its just frustrating that her taste buds have changed so much. We have a hard time finding things she likes. The chemo can change their taste buds and Avarie has definitely been effected by that.
One other note, I thought I had posted about this, but perhaps I didn't. Sometimes I forget who I've told things to and who I haven't, blog site included. But Avarie will not be receiving a Bone Marrow Transplant. They only wanted to perform one if one of her siblings was a match. That would ensure a lot more similar genetic material then an unrelated donor would have. They do unrelated donors for a lot of people, but in Avarie's case they just don't want to chance that. They will look for and do an unrelated donor if she happens to relapse. But we hope that never happens. We found out also that the 70% survival rate that Avarie has, isn't actually a survival rate. It is a 70% chance of not having relapse. That is how they track Leukemia. So the 95% that she had when first diagnosed was actually a 95% chance of not going into relapse. Since she did not respond and is not in the Extremely High Risk Category her chances of not having relapse go down to 70%. Its still better then 50/50 which is the survival chance of a little boy that we have gotten to know at the hospital. There is a little boy there named Emilio. He just turned 3 and he has AML which is the more severe adult form of Leukemia. It is much harder to treat and Emilio's leukemia moved into his nervous system last month. The Dr's told his mom they don't know if they will be able to stop it now. It is so hard to watch these things going on around us. The hospital can be depressing sometimes, but somehow I always come out feeling hopeful and optimistic(most of the time). They do spinal taps on Avarie regularly also to monitor if hers ever moves into her nervous system. She had one on Friday before coming home. She has them about ever 2 weeks or so, sometimes longer then that. She gets spinal headaches sometimes after them. I don't like those. They don't show up right away, it takes several days, but her head hurts so badly and she is so sensitive to the light. Basically like a migraine. So far she hasn't had one this time.
Well things are great and things are going really well at home. I just hope that home lasts. She is due back this next Monday for chemo. I don't now how long of a stay it will be this next time, but it will be at least 3-4 days. Hopefully we can stay home until then. I am enjoying the time with all my kids.