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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.



Wednesday, June 25, 2008

Day +6

Wednesday, June 25, 2008 1:08 PM CDT

Day +6

Were to start??????? Well lets start with last night, Alicia did pretty well but she is missing her Mommy alot!!!! She keeps asking me "Mommy comin" ans when she tlks to Erika which she does three times a day, every Morning, before Erika goes to work and every night before she goes to sleep. And I can tell every day that I talk to Erika it is getting more and more harder on her to be away from Alicia. I know I have not mentioned Erika very much in my entries and I am very sorry Erika for that, and I want everyone to know and understand that Erika and Alicia are very very very close. They are a splitting image of eachother, I have a picture they took together the day we left and tina is scanning it for me so I can put it here on Alcia's site. And to make it worse even though Erika is Alicia's mommy and she misses her little girl alot, Erika is my little girl (ok she might not be little she will be 22 a month from today) but she is still my "Girl" (my only child) and I am missing her sooooooooo much. I have never been away from my daughter this long ever in our whole life. WE MISS YOU ALOT ERIKA. She will be here soon, the boys are staying home with daddy and Erika is coming, I can not wait. And Alicia also wanted me to tell her Daddy that she misses him and her brothers also. (I have not seen Jayshon since her was 2 days old)

This morning was also a hard one for us (ME) also. When I woke up around seven I went to give Alicia a kiss and my heart fell through my stomach. There was hair all over her pillow. Alicia was twirling it around her finger and pulling and it would come out still around her finger. She kept itching and asked me to brush it (which she never does) and by the time I was done brushing it I had filled a freezer zip lock bag (the big ones) full of her hair. It took everything inside of me not to break down but once again I pulled myself together and told her how pretty she was. Alicia acts like it is no big deal so that helped me alot and now I am fine with it.

The "Hair Fairy" is coming tomorrow night. Child life is going to come in and tell her a story about how her hair will go to the bunny's or something and how they leave her a nice present and take her hair. (GREAT)

She also is having major pooping problems again. She is filling diapers faster than I can change them so they took another culture and brought more diapers. (GREAT AGAIN)

But besides all of those issues she is actually doing pretty good. Right now she is eating pudding and coloring dora pictures. We are having another Sponge Bob movie night (I need the prayers now) We have watched Sponge Bob Four nights straight now)

I will update later and I would like to end this with an poem my very good friend back home (Roxanne) wrote for and Alicia and sent to me.

We love and miss you very much Mommy, Daddy, Anshon jr and Jayshon.

Mee-Ma

P.S. Erika we just took a picture with the Dora Book and Cd you sent Alicia. She loves it and playes with it every day. And she got the Dora dress two days ago. That is the outfit she will be wearing when she leaves the hospital.

Poem for Alicia by Roxanne: written 6-18-2008

Little one so precious and pure!
As we pray for healing we also pray for a CURE!!

So full of laughter so full of life!
I have dreams of some day becoming a Wife!!

Your onery as ever as we all know!
With that mischevious smile, you give us a show!!

Your Mee-Ma's heart, she will alway love you!
Mommy, Daddy, brothers and sisters too!!!

Your gods most unique flower planted!
And I pray this one request be granted!!!

For tonight when you lay asleep!
Let you Mommy and Mee-Ma know don't worry don't weep!!!

As you are brave and you are strong!
God will and has been with you all along!!

By Aunt Roxanne

Thank you so much Roxanne

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