Well, I have a big update for everyone. A date has been set. The BMT coordinator called me today and said that she had all the information and all the dates. Alex will have cranial radiation on Dec 13, 14, and 15th. These will be done out-patient, 3 days in a row, at the Huntsman Cancer Center. This is considered a cranial "boost" because she had leukemia cells show up in her brain itself. On December 16th Alex will be admitted for the duration of the process. She will start the preparative regimen immediately. The actual transplant will happen on... get this... Christmas Eve. So... Christmas eve will be "Day 0"... Then it will be, hopefully, a steady count-up from there. A lot will be taking place between now and the 24th of December. There will be many different "work-ups" on Alex. We'll have to go into the Huntsman Center for them to make another mold of Alex's head. There will be many different blood work-ups and everything under the sun, I imagine. SO... today we are at minus 43. 43 days until transplant. Uggg!
On the donor... The bone marrow director made his decision on the donor on Monday evening. He decided to go with the donor that is CMV negative, but that is a different blood type than Alex. I forgot to ask what her new blood type will be. The donor was then contacted on Tuesday with a list of dates for Alex's targeted transplant date (a few days earlier than we'll end up doing it) and the donor came back as of this morning already and said that those dates wouldn't work, but the next few days after that would... so the donor is set and ready to go. This all determined Alex's transplant date of Christmas Eve. Oh well... Hopefully this will end up being the best Christmas ever instead of the worst? I am going to think this is a good omen having Alex's new birthday being on Christmas Day.
It is SOOO good to get all the information. But it has left me with a strange feeling today also. It sucks to have this reality made real today... even though I know we need to get this moving along.
Other than that exciting news, it's been pretty quiet around here. Alex hasn't felt all that well this entire week at home. The steroids that they gave her with the last lumbar puncture has made her entire body stiff and really sore. She has been on neupogen shots again this week and her counts are zero today. She has NO infection fighters at all onboard. Hopefully we make it to the next appointment without having to go back to the hospital. It's unlikely. It looks like waiting until after Thanksgiving isn't an option... dang it. For now her next in-patient appointment is November 19th. BUT, she has to make blood counts for the next round to proceed. Her ANC has to be 750 and her platelets have to be 75,000. Her platelets are good enough today (if they don't go down anymore) but her ANC has a long way to go. SO... here is the fun part of getting ready to go into the hospital on the 19th. Alex has to collect 24 hours of urine. We were given a big jug to put it in, and it has to be timed. They sent us home with what they call "hats". They set in the toilet, under the seat, to collect all urine. The jug of urine has to be kept on ice for this entire time. Cool huh? Then we bring this jug with us to the hospital when we check in.
So that is the plan for next week... and the coming weeks ahead. YAY!
I will update next week with blood count results and any other information.
Thank you everyone for taking the time to read about Alex's progress!
I also want to thank some of my most amazing friends!!!! (again, you know who you are!) I have the most incredible support system. I can't even believe it at times!
A very special thank you to Cynthia for bringing us dinner last Friday night when we were released late from the hospital. You have NO idea what that meant to me. The last thing on my mind was worrying about dinner but needing it at the same time. You truly truly helped me a ton! THANK YOU!!! We SO adore you!
Another very special thank you to our most amazing friends in Kansas... they are driving out here this weekend just to spend a few days with us. I can't wait to see you guys!!!
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