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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, December 24, 2009

Merry Christmas


Alicia's Birthday Present from Mee Ma

On our way to Cincinnati

I am sitting here, and my mind is thinking of many ways to start this update and after 30 minutes i just decided to just type as I think.
I am once again sorry for not updating when we got back from Cincinnati. We are going back again soon. We leave on the 5th for our home away from home. Some times I think it would be better if we just stayed in Cincinnati for a while.
Alicia is still battling GVHD in her mouth. She is on steroids but they seem to be working. It comes and goes but one thing is for sure it is not stopping her eating. Her little mouth has so many sores but she wakes up hungry and when she is eating she is asking whats for her next meal LOL. I remember so many of my friends children had the steroid weight going through transplant but not Alicia. She was always so little and myself and all my friends at the RMH had to bribe her and cook twenty different things before she would eat.
She is also having issues with her Glucose level being very high. Doc Davies says its because of the Steroids. I just don't understand how the two is going to off set each other. She needs the steroids, but her sugar level keeps getting higher. (Another reason I wish we stayed closer to CCMC.)
Today I Turned 40 and as everyone at mine and Denise's party kept saying how old we were I just kept saying in my mind how grateful, I thanked God I was there today. OK like I said I am typing from my mind so forgive me. I found a picture with Alicia with Santa last year at the RMH and one I took last week here at home. The difference brought tears to my eyes and I am so grateful we are at home once again.
Look how Beautiful She is. I am so proud of her!!!!!!!!!!!!!!!!
I want to thank EVERYONE for all of the Birthday wishes on FB. I told Denise how she needed a page but she is still learning how to get on Yahoo LOL.
Tomorrow is Christmas at Erika's so I promise to take pictures of the boys and post then soon. I pinky swear as Alicia would put it.
Merry Christmas
p.s. and Happy New Year if I don't update til then. LOL (sorry)

2 comments:

Mary Ann Gormley said...

Hi Michelle and Alicia,
Thank you so much for the update and the photos. Alicia looks so cute and so very grown up. Please give her a hug from me ok.
I am so happy that you had a good birthday--YOU ARE NOT OLD--you are 40 years young and have another 40plus years lifetime (with only good things)to live.
I think of you often and pray for you always.
Have a very merry Christmas and am praying that 2010 will be a spectacularly great year for both of you.
Love,
Mary Ann

Dianne said...

Thanks so much for the update and photos. Alicia is so cute, and I especially love the photo of her "driving" her car.

Michelle, you are NOT old. The saying is that life BEGINS at 40!!

As always, you are in my thoughts and prayers. With love, Dianne