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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.



Saturday, June 14, 2008

Day -5

Day -5

Alicia had a pretty rough night last night. About 45 minutes before ATG was finished (around 11:15) Alicia got a fever. It was up to 102.9 so the drew blood cultures and gave her tylenol and benadryl and started her on an antibiotic. (well they were supposed to start her on an antibiotic) Not long after she got a fever the chills came and then the hives started showing on her face. Of course I get very nervous but I was trying very hard not to let Alicia know I was scared. Alicia got very tired real quick so I had asked the nurse for the 3rd time about her antibiotic and she told me she was leaving for the night and assured me the next nurse would start it even if we were asleep. So Alicia and I tried to get some rest with the fever and all.

I woke up around six this morning and the new nurse told me that they were going to start her 2nd round of antibiotics in an hour so I asked her what time had they given her the first round and she told me that she was not for sure because the nurse before her last night had given it to her. I could not believe what I was hearing. I told the nurse that she had not given it to her so she went to check and came back to let me know that I was right. DUH!!!!! so needless to say Alicia did not get her antibiotic until seven this morning (which she still had a fever) and 30 minutes after she recieved the medicine her fever was gone. Now I definatly will not be getting much sleep since I have to make sure the nurse's are doing what needs to be done. They are messing with MY BABY!!!!! (i wasn't real mean)

I guess the fever and the chills are "Normal". So Dr Davies said she will be given Hydrocortozone in the 5th hour to try to be ahead of the fever since she will most likely get a fever everytime during the ATG. (GREAT)

Her Counts are dropping very fast. Today her WBC was 1.6 from 3.4 yesterday, her hgb down to 7.9 from 8.7 her platelets are at 115,000 from the transfusion yesterday and her ANC is at 990 up from 510 yesterday. Dr Davies said her counts are doing what they are supposed to be doing.

They added Cytoxen also today on top of the Fludarabine and ATG, so I am watching her close for any of the side effects to it.

Thank you so Much Michelle, John and Dianne for the VERY CUTE!!!! Dora Pj's and thank you Tina,Jo, Jacy, Keith and Cameron for Alicia's care package and Thank You so much Mom for the outfit for Alicia, It is sooooo cute. And Thank you everyone for keeping my baby in your prayers.

Mee-Ma

P.S Only 2 more days until Ne Ne gets here!!!!!!!

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