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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.



Saturday, January 24, 2009

Day +219

We finally got the news I have been waiting so long to hear..................................................................... WE GET TO GO HOME!!!!!!!!!!!!!!!!!!!!!!!

Alicia had a clinic appointment yesterday and Dr Davies said we can go home the last week of February which is only a month away!!!!!!!!!!!!!!!!!!!!!!! She said we will have to come back in a month and then every two months after that. Alicia is sooooooo excited. All she has talked about since we found out is that she gets to go home to see Mommy and Ne Ne and Aunt Kelli. Erika and Anshon will be here on the 5th so time should fly by hopefully.


There are still a lot of details to work out before then. Dr Davies wants to talk to the Hematologist in Wichita and make sure he is comfortable with taking Alicia and she made sure I understood that if anything went wrong that Cincinnati would send a Medical Jet for us.


There is also still the problem of getting us an apartment before we get back also. If everyone remembers I gave up my house to bring Alicia so my stuff is still sitting in a storage and We need a safe and sterile place to bring Alicia home to. The church we attend did a fund raiser for Alicia before we came so I am hoping that the money raised can be used to help us get an apartment to come home to. If anyone back home knows of anyone that rents out apartments please let me know.


This has been such a long time for us, it will be 9 months that we would of been here so I am very nervous about going back home. I have spent so much time just focusing on Alicia that getting back to a "Normal" life is going to feel very weird. When we get home we will have to be extra careful as to who Alicia is around. Dr Davies stressed that she can not be in a Day Care environment so that is another obstacle I will face when I will be able to go back to work and who will watch Alicia. I hope I can find someone who is willing to help take care of her that has no other children in the home. I know it will all work out but I am just kinda freaking out at he thought of going home.


Thank you everyone who has helped us and supported us through out all of this.
Alicia wants everyone to see all of her hair she has now!!!!!!!!!!!!!!!!!

3 comments:

Anonymous said...

Oh I'm thrilled!!!!!!!!!!!!!! You're almost there!!!!!
The Lord is the only true source of strength! Turn to Him always! Praying!
2 Corinthians 12:8-10 For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
Prayer Bears
My email address

Charisse said...

Oh Michelle,
this is wonderful! I was sitting in a church meeting the other day and the Pastor was talking about how the number 9, in the Bible, is Biblical for bearing fruit! So this year, 2009, is a year of bearing fruit! It is a year where you get to see the seed that you have planted and the goodness that God has for you in everything that you do and are involved in and more! I found that exciting! Bless you guys as you get ready to go home! Praise the Lord!
Love Charisse

Anonymous said...

I am very excited to hear the news about heading home at the end of February!!! Dianne