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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.



Thursday, June 26, 2008

Day +7

Alicia had a fairly good day and night. She did have another episode with her hair and she said it was itching and wanted me to brush it and when I did she lost alot more of it. I am kinda scared to brush it this morning, but I decided that if it bothers her alot today than we would just be done with it and shave it since the "Hair Fairy" was coming tonight.

Alicia got to talk to Daddy last night and that helped her alot. Anshon is such a good father. Alicia also talked to mommy extra long last night a couple of times and I could tell a big difference in her spirit after she talked to the both of them so I pinky sweared to her that she could call home when ever she wanted to.

She also talked to Ne Ne and aunt Sue (she is a very good friend who has taken care of Alicia since she was born when me and Erika are at work and she also takes care of the boys) Alcia and Ne Ne also made a pinky swear that Ne Ne would be back soon. So over all alicia had an ok day yesterday.

Now on to this morning. Her counts came back an they are all still the same. Her WBC is .1 ANC 0.0 HBG 10.2 and platelets down to 53,000.

I woke up this morning and there was a patient attendant in the room and she said she was there to give me a little break so I took up the offer and wnt to the RMH for a real shower. But boy was that a misstake. I came back to Alicia and NO FEEDING TUBE. While I was gone she had vomitted and her tube came out. So at two this afternoon she will be having another one put in. Alicia keeps telling them No so I am sure this will be no fun at all. Please pray that this one stays in.

I will up date later, thank you everyone for all of the support.

Mee-Ma

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