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ALICIA'S JOURNEY WITH FA

Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.



Tuesday, December 9, 2008

Day +173

Just a little update to let everyone know that Alicia did fine at Day Hospital today. Her Hbg is getting kinda low so they foresee her needing a transfusion Friday when we are back in. Today it was at 8.1 which is down from 9 on Tuesday. Her platelets dropped a bit also down to 65,000 but they are still holding pretty steady. Good news her wbc came down a bit to 21.89 and Anc to 19.78. I know that is not much but it is moving in the right direction.

Last night Ronald McDonald was back at the Rmh House a long with Santa. They had the Tree lighting ceremony and there were a lot of sponsors here. Alicia had a blast, and she even told Santa what she wanted for Christmas again. Only this time she did not tell him she wanted to go home. I guess she figure he already took care of that and she better get her dibs in for "Real" stuff. I again listened in and this time she told him she want a "Present" for Christmas. She did not say exactly what she wanted only that she wanted to unwrap it and it had to be a "BIG" Present. LOL that just about leaves the door open for anything. She also was on the news again, A gentleman from Duke Energy here picked Alicia out of all of the kids and asked her to help him do the count down to turning on the lights on the tree, so Chip Wood ( the guy from Duke) His son, Ronald McDonald, and Alicia got to hold the wand and count til the lights came on. She told him Thank you so many times.

On the down side it is snowing back home. It is the first snow of the year there so I am kinda missing home a little today. Hopefully it does not snow long and effect our travel date. Did I mention there are only 14 days left on Alicia's chart!!!!!!!!!!!!!!!!!!!!!!! I guess one good thing is though I do not have to worry about anyone riving my car in the snow back home. My 1995 Hunter Green Camaro was totalled yesterday. Erika called me to tell me that my nephew was driving my car yesterday when he turned in front of someone and my whole front end is smashed in. He is OK and not hurt but needless to say I have no car now on top of everything. ( I love you Denise!!!! I will need a personal taxi now when I get there in 14 days ( have I mentioned we will be home two weeks from today!!!!!!!!!!!!)

Thanks everyone for letting me vent. Cory ( my nephew) we are having a sit down talk when I get there LOL.

3 comments:

Anonymous said...

So sorry to hear about the car. Thrilled to hear about the special tree lighting party. Hang in there and have a good day. Dianne

Charisse said...

Sorry to hear about your car. That is very unfortunate. That is exciting that you only have 2 more weeks til going home! Yay! Bless ya heaps,
Love Charisse

Lynn said...

Two weeks and counting! Am so happy!!!!!!!!!!!!!
Praying right now!
Isaiah 65:24 And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear.
Prayer Bears
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