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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, November 11, 2008

Day +145

Well we are at the Hospital in Day Hospital and I have a feeling it is going to be a very long day. We arrived here at 8:30this morning and it is now almost 11:30 and all that has been done so far is they have taken 50 ml's of blood from Alicia, a stool sample and a urine sample. She still has three infusions that need to be done one that takes 3 hours one that takes two hours and the other takes an hour and a half. Her Platelets came back at 27,000 so they can probably wait until Thursday to give her those but her Hbg has not came back yet so she might need blood we do not know yet. I am sure she would after the LARGE amount they just took from her. They had to get blood for her Cbc's, then the Doctor wants cultures on both lines for any bacteria, they also did a Tac level and some other off the wall test I know nothing about. So to my calculation we will be here til 8 or 9pm.


I did forget one thing which might also put us here for a little while also, they are also doing an x-ray on Alicia's tummy to see if there is any issue's as to what is causing all of the tummy pain. So hopefully they will bring the Portable one up here if not then we will have to go to Radiology before we leave.


Alicia woke up this morning and told me to go find Mommy, it was sooo cute. When I told her she only had three days left she said, " go night night wake up, go night night wake up, go night night wake up then MOMMY HERE." I laughed so hard cause she was right.


I also caught her brushing her hair last night. She is getting more hair everyday. I took this picture so you could see how much hair she is getting.




Well I will update tomorrow with all of the results we get from the tests being done today.

1 comments:

Charisse said...

Hi Michelle,
it is lovely that Alicia's hair is really starting to grow back now! I hope the day is not too long for you.
Love Charisse