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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, June 17, 2008

Day -2

I finally got a full 5 hours of sleep last night with out being woke up every hour to a fever or vitals which Alicia just totally dislikes or runny poop. Denise stayed the Night at the hospital with all of that and I went back to the RMH and got some much needed rest. Alicia did pretty well last night Denise said. Denise was tired this morning (and I know all to well why she was).
I was woke up about 5:45am though by a call from Alicia's Nurse because Alicia needed red blood and they wanted to know if they could start it without me here which I said was ok and told them I would be right over, but I did sleep well last night.

Today Alicia has had a very high blood preasure. The highest bein 168/104. They are trying different medicines to get it under control. It seems to e going down a little but not low enough yet. Hopefully they will get that under control soon.

Her Radiation is scheduled for 10:30 in the morning so I will probably stay with Alicia tonight. I want to watch her close.

Alicia was sooooo happy to see Denise. Now she wants nothing to do with me. When it is time for her vitals she will sit so still for Denise, and she does not want me to sit by her or hold her hand, only Ne Ne. I know she still loes me but she is so happy Ne Ne is here, and actually I am kinda glad I got to breath today, I am sure she will be my friend tomorrow.

Two more days until "HER SPECIAL DAY" I am very ready!!!!! I will let everyone know how Radiation goes tomorrow.

Mee-Ma

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