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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, October 23, 2008

Day 12????????????????????

Yesterday when we were in Day Hospital they had on Alicia's papers that she was Day +125... I told them I thought it was wrong and we were a couple of days past that but Kim ( our nurse) counted again and that is what she came up with so I guess we are at Day +126 today.

Everything is still going well with Alicia. We were in Day Hospital again today but this visit was for 11 hours. We were so tired by the time we got back to the RMH. Alicia is asleep right now and I am not to far behind her.

The Doctors are starting to worry a little more now with her elevated White Blood cell count. It could mean many of things, one being a virus or infection but all of her cultures are coming back negative so they are getting concerned. Another could be Blasts which could mean Leukemia but I do not want to even believe or think about that. Another could also mean the high doses of steroids she is on and has been for some time now due to the GVHD. I have an appt now with Dr Davies on Monday ( switched from Friday ) so hopefully we will know something as to what she is thinking then.

I am starting to feel a little depressed with the Holidays coming from being away from my family. I am glad Erika and Anshon and the boys will be here for Alicia's Birthday but I have never been away from my Daughter on Thanksgiving or Christmas. That has been on my mind alot lately. I am sure it has been on her mind also with not being able to be with her daughter as well. I am also glad that Denise will be here on Thanksgiving, I am so lucky to have her as my sister. The sacrifice she is making and leaving her family for us on Thanksgiving will not be forgotten. I LOVE YOU DENISE!!!!!!!

Well I am very tired. Today was a very long day. This picture I wanted everyone to see how well Alicia is looking. I took it Yesterday, it is in her room at the RMH. ( Thanks alot Denise for the Playdough, she made a HUGE mess)


3 comments:

Anonymous said...

No hope of being home by Thanksgiving OR Christmas?!
Stopping by to let you know I'm still here praying hard!
Psalms 4:1 Hear me when I call, O God of my righteousness: thou hast enlarged me when I was in distress; have mercy upon me, and hear my prayer.
Prayer Bears

Anonymous said...

Thinking of you, and sending lots of love. Dianne

Charisse said...

Dearest Michelle,
what is Alicia's wbc these days?
I know that medically the doctors have to be responsible and list all the things that a high wbc could be.....but that always makes me SO cross! Ha! Especially when they mention something scary! I will be praying. I pray God's protection.
Love Charisse