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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 16, 2008

Day +180

O My I have been without the Internet now for three days. It actually just came but on minutes ago!!!!!!!!!!!!!!!!!!!!!!!!!!!!

it is snowing here in Cincinnati, It is so pretty the flakes are so big. Erika called today to let me know it was snowing there in Kansas also. I sure hope it stops in both places by next week Alicia only has six more days left on her chart!!!!!!!!!!!!!!!!!!!!!!!!!!!


I have been biting my nails for the last two days. Alicia started coughing a couple of days ago and now her nose is running faster than Speed McQueen. I have been taking her temp every other hour and the docs have all listened to her and they all say her lungs are clear and it is just upper nasal so hopefully it will take its course and be gone in a week!!!!!!!!!!!!! It just has to be!!!!!!!!!!!!!!!!!!! She has been sleeping all afternoon and the Docs say that is the best and I am keeping her in the room as much as possible. Please pray that it goes away quick and it does not stop us from getting home for Christmas!!!!!!!!!


She also had a Cardiology appt today and they started talking about the hole she has in her heart. I was like whoa!!!!!!!!!!!!!!!!!!!!!! slow down, what hole!!!!!!!!!!!!!!!!!!!! The Doc looked at me strange and said the one that showed up on the Echo when she was inpatient. I was like, well I guess it was not that important because no one To me told me!!!!!!!!!!!! He told me it was very small and he was not to concerned at this point with her other issues and they will just keep a close eye on it and follow her for a while.


Hopefully the Internet stays working here and I will update after our appt on Friday. Please pray Alicia's cold does not get any worse!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2 comments:

Anonymous said...

I am praying that Alicia's cold goes away. Take care, Dianne

Charisse said...

Praying my dear.
Love Charisse