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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, January 6, 2009

Day +201

O my I can not believe it has been over two hundred days since Alicia received her "New chance at life". I never realized when we started this journey that we would still be in Cincinnati over two hundred days later. She has came a long way though and I thank the Lord every day and every night for every day and every breath and every moment he has given Alicia. She is truly a fighter and a Winner. I am so very proud of her!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!





We are just hours from being discharged. Alicia started eating a lot better yesterday, and today we are being discharged back to the RMH. Alicia is surly showing out before she leaves. She is singing for every nurse that comes in, and she even called Alyssa which is one of favorite Nurse's here on the South side of A5 along with Liz. She even started dancing and popping her butt when Dr Philipovich came in this morning to check her out. I was soooo embarrassed. Then she asked the Doc for a dollar because she sang also. Everyone just laughed and I turned beat red. I shouldn't even have been surprised.





Alicia said good bye to Theo again, this stay he was here with her every moment. They are such good friends. She had to make sure he got all of his meds last night before she left today, it was so cute, she cares so much about Theo. I took a picture of their "last night together" as you can see on the table he gets just as many meds as she does.



Hopefully this is the one and only set back and we are on the road to Kansas soon. I can not wait til the day when we touch ground and do not have to return here for a long time!!!!!!!!!!!!!!!!! Thank you so much for everyone who believes and supports Alicia. Without each and every one of you we would of not made it this far without going crazy. There are so many of you ( you know who you are) that have been extra special to us and I want to thank everyone again and again for everything you have done and the many many prayers that brought us this far.

3 comments:

Anonymous said...

I love the fact that Alicia and Theo are just good friends. She is "so kind" to give him his meds. I think she will be a nurse someday. Hoping and praying you are back to RMH very soon. Love, Dianne

Anonymous said...

Poor little one...she SHOULDN'T still be there over 200 days....
Continuing to pray in Seattle!
Psalms 27:4-5 One thing have I desired of the LORD, that will I seek after; that I may dwell in the house of the LORD all the days of my life, to behold the beauty of the LORD, and to enquire in his temple. For in the time of trouble he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock.
Prayer Bears
My email address

Momma Bear said...

Pneumonia???? Bless her little heart! Praying!!!

Blessings and Bear Hugs,