Doing Great and We Have Transplant INFO!!!!

It has been awhile since we updated and I am sorry things are kind of busy and crazy right now and we have been without a computer for awhile. Everything is slowly settling down now though. Avarie is doing great in Rehab, she continues to get stronger. I don't think walking is in her near future though. She has gotten a lot stronger with with crawling and scooting, but she fights the standing and walking still a lot right now. The therapists say that it will come when she wants to start keeping up with everyone and or builds her confidence up. They say it can come really fast, but in the meantime it is almost always a fight with her to try to get her to stand or walk. She has started hitting a lot and throwing. I think she just becomes so frustrated she doesn't know what to do. Her normal personality now though is happy and very pleasant, she likes to laugh and has started making friends with the other kids at the hospital and playing with her nurses and Dr's more. The stronger she gets the happier she seems to get.
On the cancer front, things are going well. She is getting chemo this weekend and then has rehab the rest of this next week, but then her case will be being transferred to Doernbecher. We met with the transplant Dr on Thursday up at Doernbecher and we now have a transplant schedule. Avarie will begin all of her pretransplant testing Memorial Week. They are testing how well all of internal organs are functioning. Depending on those results will determine which route we go after that. She has two possible donors, both are great matches. It turns out we never lost the first donor, he is still our donor, but we have since also located a Cord Blood donor. Cord blood is blood from the umbilical cord of a baby. There is a lot of new research going on in the Cord blood science and a lot of it looks very promising. Both donors are great options for Avarie, but each option requires a different mix of chemo's to accompany them and so depending on how her organs are funcitoning will determine which way we go. The plan is for us to be checking into Doernbecher the week of June 15th for transplant, that is just a little over 4 weeks from now. We will spend all of June and most likely all of July in isolation. We will then spend 100 days in intense follow up. The Dr's told us to plan on spending most of that there at the hospital as well considering how Avarie has responded to to Chemo in the past they are expecting a very sick and difficult recovery for Avarie. Because of how sick Avarie has been they also don't want to use their normal transplant protocol, they don't feel her body could handle it. Normally they dose the patient with very high chemo therapies and high full body radiation, but they will not be doing that with Avarie. She may receive some minimal radiation, but it won't be to her head and it will be only a little bit if any at all. Again that depends on what her testing shows, they may not do radiation at all. Also they will use a different drug regimen for Avarie. One of the options is for an experimental drug that is manufactured in Germany and is only used here at Doernbecher and Seattle. Seattle is one of the top transplant hospitals in the world, and they are both having great results with it. Their success rate is 71% and Avarie's chances right now with transplant are only 60%, I like any little bit of possible success that we can get. Unfortunately we don't know if our insurance will cover it yet or not.
We are expecting Avarie to come home next weekend. It will have been almost 2 months since she has been home. She will be home, but will be back to the hospital a lot for the next few weeks after that until she officially checks in around June 15th.
We were able to check Avarie out on Mothers day for a few hours and we took her to the zoo. I know that it was Sunday and I hope that anyone reading that can forgive us, but we didn't want to bring her home for only a couple of hours and then turn around and make her go back to the hospital. It would have been devastating to her. So we took the family to the zoo and it was wonderful. It was the first family thing we have done together since before she was sick 7 1/2 months ago. We took some great pictures and had such a great day together. I have tons of pictures to post, but the camera is at the hospital with Craig, I will have to post the pictures later.
I wanted to ask if anyone knows of anyone getting rid of Polly Pockets. We are trying to build a collection of Polly Pockets and all of their fun gear for Avarie for the hospital. We can't take anyting into the hospital that can't be sanitized or that isn't brand new and Polly Pockets are bendy plastic and can be sanitized easily and Avarie loves them. So if anyone knows of any little girls that have outgrown their Polly's or happens to come by any at a garage sale I will pay for them. We are just hoping to hide them away until hospital time and then pull them out and give her something wonderful and fun and new to keep her busy during the next 5-6 months.