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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, September 18, 2008

Day +91

Alicia had a GREAT day yesterday. I was so excited, I know to many what I am about to say probably does not sound like a big deal but it was HUGE for me. Any way I walked into Alicia's room and for the first time in almost 2 months I seen an EMPTY plate!!!!!!!!!!!!!!!! I almost cried. She was so proud she kept saying " Look Mee-Ma all gone". It only had four french toast sticks on it but it was EMPTY!!!!!!!!!!!!!!!!!!!!!!!!!!

She also went down for therapy yesterday and they said she did awesome. She even stood up for almost 30 minutes playing and even took a few steps. The therapist said she had not seen Alicia in such a good mood in a very long time. They said she laughed and was very cooperative.

Her skin is still by far better. It still looks very bad. I have been keeping her covered in steroid cream and they have added another type of GVH med called MMF on top of the other two she is already on and gave her an extra infusion of amixaflex which she usually gets once a week to help fight the GVH.

Her Ultrasound came back that everything looked good so it has to be the GVH flaring up. Hopefully they can get it under control.

Now with all of the positive things going our was Alicia just spiked another Fever this morning, we still haven't found out the reason for the last three or four fevers ( I lost count ) so we probably will not know why this one happened either. Her temp is down now so hopefully it stays down.

Mommy and Daddy will be her tomorrow we are so excited!!!!!!!!!!!!!!!!!! Please keep Alicia in your prayers.

5 comments:

Charisse said...

Hi Michelle,
just letting you know that we prayed for Alicia at prayer meeting last night. I am so glad she had a better day! Praise the Lord!
I will be leaving for FA Camp here in Australia today and won't be back til Monday night. I will be away 3 to 4 days so I will catch up on how things are when I return.
Love you lots,
Charisse

Lynn said...

Wonderful update!
I use this passage quite often because of it's profound impact. Some of the first words of Scripture ever written assure us of our bodily resurrection in Christ.
Am here praying right now.
Job 19:25-27 For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God: Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.
Prayer Bears

Anonymous said...

Hi,
What wonderful news about Alicia eating and being able to do well playing and walking!
I know that you're on a roller coaster with the BMT and all that goes with it (and you probably hate roller coasters as I do), but you are strong and place your trust in God.
Will continue to pray and pray...
faith can and does move mountains.
Love, Mary Ann

Anonymous said...

Hi angel of mine alicia.. i'm so happy to hear that you made a happy plate..good job lil momma! I love ya both and you are still in my prayers

Lynn said...

Stopping by to you let you know that your family is still in my thoughts and prayers.
Ephesians 3:16-19 That he would grant you, according to the riches of his glory, to be strengthened with might by his Spirit in the inner man; That Christ may dwell in your hearts by faith; that ye, being rooted and grounded in love, May be able to comprehend with all saints what is the breadth, and length, and depth, and height; And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God.
Prayer Bears