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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.



Monday, October 13, 2008

Day +118 DISCHARGE!!!!!!!!!!!!!!!!!!!!

WE ARE OUT OF HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Everything is a GO!!!!!!!!!!!!!!!!!!! Alicia is doing very well!!!!!!!!!!!!!!

I have taken all of our belongings to the RMH yesterday ( thanks Tina and Keith) I only have one load to take before it is time to take Alicia and my computer will be in that load so I will update when we finally get there.

Alicia had the hugest smile on her face yesterday when she seen Keith. She was looking for him all night after he left. We even had to call him and she kept telling him to come back. I can not wait until Alicia can be around everyone. he misses everybody so much.

We are also looking forward to getting to spend time with Abby and Reid when this is all over with. Alicia wants to play with all of Abby's toys.

We probably will not be out of here until late afternoon. Alicia has to get Platelets, they were down to 15,000 this morning. Her Wbc is still elevated, to day it was at 19.3, her Hbg is still good from her transfusion a couple of days ago at 13.5 and her Anc is still high at 15.63 today.

he also has to get her IVIG which will take four hours. They had to pre-med her with Tylenol before the infusion so if she was going to get a fever they would not even know it!!!!!!!!!!!!!

We will be back in day hospital Wednesday. Our only day to our self's is Tuesdays so when we leave here this afternoon we will have all night tonight and tomorrow. That is good since I have not been able to put anything away in our new room at the RMH.

Well wish us luck I am off to the RMH with our last load!!!!!!!!!!!!!!!!!!!!!

9 comments:

Anonymous said...

It is a happy day!! Love, Dianne

Ne-Ne said...

hi sis dont pass out i am on the computer again. i know it looks like the baby steps you are taking are getting you no where but look at ya now living in a suite at the rmh. you should feel like weezy jefferson "moving on up" ha ha love you see you soon Ne-Ne

Anonymous said...

We are soooo HAPPY for you!!!! Hooray. Enjoy your day alone together. No one coming in a million times a day! Some normalcy will do you both good. We'll keep praying for progress.
Many hugs and smiles,
the Fiaschetti FAmily
Mary Ann, David, Joey & Peter

Anonymous said...

OMG! I can't believe it. I'm excited, scared, confident, leery, hopeful, guarded, just damn HAPPY! I'm sure you are feeling so many emotions too but I know you can do this. You are doing a wonderful job and have handled every up and down perfectly. Great job!

Anonymous said...

Can't even put into words how thrilled I am for your family!!!!!!!!!! Thank you, Lord!!!!!!!!

These verses contain the reason why we have the hope of life to come. Know that I'm here praying so hard!
Ephesians 1:17-20 That the God of our Lord Jesus Christ, the Father of glory, may give unto you the spirit of wisdom and revelation in the knowledge of him: The eyes of your understanding being enlightened; that ye may know what is the hope of his calling, and what the riches of the glory of his inheritance in the saints, And what is the exceeding greatness of his power to us-ward who believe, according to the working of his mighty power, Which he wrought in Christ, when he raised him from the dead, and set him at his own right hand in the heavenly places...
Prayer Bears

Charisse said...

Yeeeeehaaaaa!!!! That is great! Enjoy!
Love Charisse

Anonymous said...

WOOHOO!!!!!
I AM SO HAPPY FOR YOU GUYS!!!!
GREAT JOB ALICIA!!! WAY TO GO!!!

Dianna's Momma said...

YEA!!!!
I am so happy for you! :-)
Best Wishes,
Nanette Foster (Dianna's Mom)

diannasjourney.blogspot.com

Anonymous said...

Hi Michelle and Alicia,

Just a note to say hi, and as always you are in my thoughts and prayers. Love, Dianne