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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.



Sunday, September 28, 2008

Day +101

Well we survived Day +100. It just doesn't seem like it has been that long. Alicia had another good day yesterday. The real Alicia is coming out more and more. All of the nurses have learned how to handle Alicia now, but she still knows how to get her way.
These are pictures of Alicia walking in the halls.......................


She walked in the hall again last night with out holding every one's hand, she did very good. She wanted to stop at every ones door so she could see who was in there and ask them if they wanted to play. It was so cute, she couldn't understand why none of the kids could come out and play. She stopped by Samantha's room and talked to her for a long time. ( she looked very good!!! ) Alicia kept asking her was she OK. Then Alicia kept telling her that her hair was all gone. It was so funny. I kept telling Alicia that hers was all gone also but all she worried and kept saying was that if Sam was OK. Before she stopped at Sams room she Stopped at Hannah's room. She just turned 6 yesterday so Alicia stopped and sang her Happy Birthday. Once again she asked Hannah if she wanted to play. It has to very hard on young children like Alicia not to be able to have that connection with children her own age. I guess Theo will just have to do for now.. She did get to have a little time with Abby though. Reid and I did sneak out in the hall by the elevator with both of them. ( don't tell on us!!! ) We kept distance between the two but they got to talk for about 30 minutes. Alicia was very concerned for Abby. She kept telling her if she would wash the ouchies on her hands it would be all better.
This is a picture of Abby and her Mommy Reid...................
They both have became very special to us. Reid and I have became very close during our children's transplant. Abby is just so awesome. We have already made plans for the 4th of July. Alicia and I are going to Nashville to visit them. I cant' wait til the girls can play with out masks and five feet between them!!!!!!!!!!!!!!!!
Thanks again for all of the support and prayers. I know I say that every time I end a journal but without those two important things from everyone I would not of made it as far as we have!!!

4 comments:

Anonymous said...

Thanks for sharing all of the new photos. It is great to see Alicia up walking around. I am glad Alicia and Abby had a chance to chat. Thinking of you! Dianne

Teresa said...

I loved the photos. I can't imagine how hard it has to be for her (and you) that she doesn't get to play. It was great seeing Alicia walking! (and heartbreaking too...I keep thinking of the SPAZ she was at Camp Sunshine!! hehe!!) Keep up the awesome work, Alicia!! I know I don't always write, but I do read. Sometimes I have screaming babies, so it's hard to leave a comment - just know that we are thinking of you all.

Hugs,
Teresa & Emma

Lynn said...

Know that I'm here praying right now!
Isaiah 49:13-16a Sing, O heavens; and be joyful, O earth; and break forth into singing, O mountains: for the LORD hath comforted his people, and will have mercy upon his afflicted. But Zion said, The LORD hath forsaken me, and my Lord hath forgotten me. Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands...
Prayer Bears

Anonymous said...

Alicia, you are so brave and so strong! You are doing awesome walking in the halls! Abby loves it when ya'll walk together. We love you so much and can't wait until you are all better!
Much love,
Reid, Perry, Peyton and Abby Patterson