I just had rounds with the Doctor and I am sure she could see the frustration and concern I had. They are running a lot of different tests today, one is to look for Antibodies against her Red Cells.She does not think that the drop in her counts has anything to do with the GVH but I am still not convinced. She did assure me though that they are watching Alicia close which made me feel a little better. There is still no reason for the fevers yet which concerns me also. I keep hearing that there might never be a reason for them but that was not what I wanted to hear and they know that. There is a reason and now that they are coming and going more often makes me think that surely there will be an explanation as to why.
I will update more as I get any news
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.
Sunday, September 14, 2008
update on what doctor said
Posted by Michelle at 11:48 AM
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4 comments:
I am so sorry you still aren't getting answers. We are worried about Alicia's fevers and GVHD as well. It would be nice to know what is going on and causing all of it. I hope they are able to figure it out for you...either that, or the fevers clear up and go away for good.
That was pretty funny about Alicia and her meds! Love that you keep your humor through out all of this!
Hang in there, Michelle. I really can't imagine how long some of these days get and how endless it must all feel.
Love,
Teresa & Emma
Michelle,
It breaks our hearts too about Alicia's fevers. Hopefully it will be gone for good soon. We'll continue our prayers and add Denise tonight for tomorrow's surgery. You have much on your plate. Wish we were there to give a hand and a big hug.
Mary Ann Fiaschetti
(Peter's Mom)
My love, I am also sorry that you don't seem to be getting any answers. I am glad that they are watching Alicia closely.
Shame, poor Alicia, she is trying to have some control over the situation as well....and so she is being bossy over her meds. That is amusing though! She is so sweet.
One day you will be able to put all of this transplant stuff behind you (((HUGS)))
Love Charisse
Hope you get some answers soon!!!!!!!
Continuing to pray so very hard!
Ephesians 2:8-9 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.
Prayer Bears
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