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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.



Friday, June 13, 2008

Day -6


Alicia had a pretty good first night in the hospital. She was up late and did not go to sleep until after Midnight but she slept through the vitals they took at 4am which they do every four hours. She did wake up during the 8am vitals though.

I actually got around 6 hours of sleep myself. It felt very good!!! I think I was just so tired from losing so much sleep that my body said it was time to rest no matter what.

The Doctors did rounds around 9am and Dr Davies was there as well. I really like and trust Doctor Davies, she cares alot about the kids. They also draw blood for a cbc every morning at 4am, her platelets dropped to 12,000 and her hbg to 8.6 so Dr Davies said she would need transfusions which she is getting her platelets as I am wtriting this.

After her Platelets are finished she will be starting her Chemo which will start with the Fludarabine which will last for 30 minutes and she will get ATG after that which will take 8 hrs, they said some kids have reactions to the ATG so it has me a little nervous.

Tina and the girls will be here in a littlw while so hopefully I will be able to sneak away and eat. Alicia had a problem with me leaving the room with her by herself at first last night just so I could go to the bathroom but today she is doing alot better with it. The first time she tried to pull a chair up to the door so she could open it and come find me, but after she knew I was coming right back she was ok with it.

well I will update later, Alicia is fighting the nurse that is here to take her vitals for the 20th time today. She keeps telling them "No All done".

Mee-Ma

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