REMISSION!!!!!!!

Avarie had a bone marrow biopsy on Monday the results came back this evening (Tuesday Dec.2) she is in remission finally. That means that they found less then 5% leukemia in her bone marrow. Actually the Dr said they didn't find any measurable amounts. This is great news. We were waiting for this since week ones bone marrow biopsy. It doesn't change any of her treatment plan, it just means that we have finally found the right kind of treatment plan for her. We just have to keep it from relapsing. She will still need a bone marrow transplant if one of the kids is a match or she will still undergo the next 3 1/2 years of chemo. Remission just means that we have the cancer under control. She will be cured when she has completed treatment and is cancer free still at the end of treatment.
I feel like throwing a party. I have been telling every nurse I see, I know all the nurses by now, so its not weird that I'm telling them, its just so exciting to have such good news finally. They are all aware of Avarie, whether they have been our nurse or not, they all know how sick she is. She has been one of their sickest kids here for along time. They are all so happy for us.
I was recently talking to someone who expressed a wish to know the details of what was going on on a daily basis. I realized that my blogs lately have been sporadic and not filled with the amount of info that I had been putting in them before. I think it just got to the point where there are so many little things going on I stopped writing them all and just started posting when there was something positive to post or if there were any answers, which there have not been many. I am going to try to start adding a few of the details of how she is actually doing to more of the posts. I can't promise I will write everything about our days here, but I can definitely be better then I have been recently.
So here is what else is going on. They did a CT scan yesterday in addition to her bone marrow biopsy and her lumbar puncture. The CT showed some abnormalities. They found spots on her kidney's and they could see the nodules on the inside of her, some that we weren't even aware of from the outside a lot of them around her spinal column. So today they did several biopsy's on her kidneys and on some of the nodules on the inside of her. They were able to do them all under CT guidance with just a small needle, they did not have to open her up. So there is very minimal pain from the procedure today. The Dr feels he got some really good samples and even showed me the CT's and the samples. It was really cool getting to see it all. I know some people would be totally grossed out by that, but I find that stuff really interesting and I am so happy that they got some good samples, hopefully that will mean answers. She continues to run high fevers, although they are coming a little less frequently, but they still continue to run around 104 degrees or more, we haven't hit 105 in several days thats at least good.
She has also been undergoing respiratory therapy every 4 hours. I don't think I posted it before, but she has had a small collapse in her right lung. It hasn't affected her oxygenation levels, but we want to get it fixed before it does. They come in every four hours and put an oxygen mask on her that forces air into her lungs. Its pressurized air, so it forces more air then you would normally breath in to try to help inflate that lung. They had hoped it would have reinflated by now, but so far that has not been the case. It is sounding a little better to them today then yesterday, so they are hopeful that it is slowly working. They will keep coming every four hours and then she will probably have an x-ray here soon to check on it.
One of the other big things that has happened in the last week was that they went in and removed a lot of the dead and infected tissue around her bone marrow sight that had been infected with e-coli. It just was not healing so they had to go in and really open it up to allow it to heal from the inside out. It is about the size of a quarter around an inch deep. They are packing it with a special dressing that actually has silver in it. Silver helps infection. So she has a very expensive bandage on her back.
She restarted her next round of Chemo last night. This round will go until Wednesday and then she will start some rescue drugs to try to help prevent damage to her organs. They poison her to try to kill any bad stuff and then try to rescue her after a the drugs have had a couple of days to do their work. Her immune system will be trashed again, but thats unavoidable. We are just hoping to not have a bunch of horrible infections to have to deal with, but considering that we are still dealing with them right now and she actually has an immune system I can't imagine that infection is not going to still be a problem. Her immune system will be at its worst this weekend into the middle of next week and then should start to rebound by the end of next week. The infections have been one of the worst parts of all of this. Hopefully the biopsy from today will give us some answers so that we can stop giving her so many antibiotics. And then we can focus on one group of antibiotics to fight the infection instead of a variety of top gun antibiotics trying to fight something that we have no idea what it is.