Sorry, its another long Post

Avarie is still in the hospital, but Craig traded me spots and I came home for a couple of days. Hopefully we will bring Avarie home by tomorrow. She has to stay until her body completely pees out her chemo. They fill her up with this huge amount of it and then fill her up with tons of fluids to help her pee it all out. She has to stay until she does and they monitor the levels in her blood a couple times a day to make sure its with in "normal parameters" whatever normal is. So far so good, she is doing well.
The big news that after the bone marrow transplant was taken off the table they have now put it back on. They said that the latest research is now supporting transplants for high risk ALL kids even with unrelated donors. Before they didn't want to use a unrelated donor because there are a lot of additional complications that can come with an unrelated donor, but now the research is supporting that. So we are meeting with the transplant Dr. from OHSU on the 26th of this month to discuss options. I am not convinced that I want to do a transplant for Avarie. It increases her chance of not relapsing by 10% but there are so many additional risks to it and side effects. Of course there are a lot of side effects to doing 3 more years of chemo too. If we do the transplant she will no longer need chemo, she will be cured. It doesn't mean she can't relapse, a lot of people still do, it just increases the likely hood of her not relapsing to 80% vs the 70% she is at right now. There is really no good option. Both are scary and life changing things. Both options will hurt her quality of life. At this point I am just trying to figure out which one will give her the best chance of survival and still give her a good quality of life. Side effects is a big issue to me right now, both short term and long term. I just don't know enough to make this decision yet. After we meet with the Dr at OHSU we are also going to get a second opinion from either Seattle Children's Hospital or Minnesota Children's Hospital. Seattle is the hospital that perfected the transplant, and Minnesota has the Dr that perfected the Cord Blood Transplants and is considered one of the top Dr in the field of transplants. This is just such a big decision. The transplant its self is a very scary and dangerous thing, I just want to make sure we make the right decision for Avarie.
The other big thing going on is with Avarie's legs. We have had the Dr's that oversee the Physical Therapist (I can't remember what their title is) evaluate Avarie again. They have been saying that it was muscle atrophy and over sensitivity of Avarie's causing the problems, but one of the other Dr's came in on Friday and gave a different opinion. He thinks it is nerve damage due to the chemo. Then on Saturday the other Dr came in and gave the first opinion again and said she does not think it is nerve. AHHHHHH! This is very frustrating. I just want my baby to walk again. She is going through enough with the chemo and the infections. Her inability to walk and her intense pain is just too much. I want this fixed. The Dr's have a test they are going to perform on her to determine if it is nerve or not. The next time she goes under anesthesia they are going to perform an electric shock nerve test. They will shock her nerves and see if her legs respond. The Dr said he will only really need one shock to determine if it is nerves or not. I am just glad they can do it with her asleep. Originally they wanted to do this test but they wanted to do the one where she is awake. I guess it is a little different what they are doing with that one, but I am just glad they can do something to get an answer.
There are unfortunately problems with either diagnosis. If it is nerve damage this will take years to correct itself because she continues to get the drugs that are affecting her nerves, so until she is done with the particular chemo (vincristine) that could be causing this her nerves can't regrow. And then when they do start to regrow, they regrow very, very slowly. This means she would have no use of her legs for several years. The other option is that it is muscle atrophy(which both Dr's agree she does have, the question is more why?) and Hypersensitivity which the only cure for is to push through it. Trying to get a 4 year old that is already so miserable to push through intense pain is not going to be easy. But the biggest problem I found out is going to be insurance. I guess their guidelines say if the person is not able to participate in their program enough to actually benefit themselves then they won't pay for it. She is 4 and in pain, how is she suppose to participate in it. The insurance also will not do a hybrid program, meaning pay for her to be in their rehab program and also pay for her chemo treatments which require staying in the hospital. They use to pay for things like that, but now they won't, it has to be one stay or the other. The Dr's are going to try to petition the insurance company on Avarie's behalf explaining that her legs are getting worse, which they are. But they told me not to hold my breath. I asked them if I threw a big enough stink would it help, they said it might. So if they deny the coverage I am planning on throwing a really big stink with news agencies and anyone that will listen.
I am just so sick of this all. I just want it all to go away. I miss the boring days when laundry and bills where my biggest worries. I don't even think about those things anymore. I just want my baby back. She is just so sick. I have handled this whole situation pretty well I think. I've just been in survival mode where I've felt like OK what do I need to do next. But lately that is fading. I'm starting to just feel so sad. That's the best way I can describe it, I'm just so sad. I hope I can make it back into survival mode, I like it there better.