CLICK HERE FOR THOUSANDS OF FREE BLOGGER TEMPLATES »

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, December 29, 2009

HOME AGAIN

LEAVING THE HOSPITAL



READY TO BREAK OUT


HOW MANY WIRES DOES AN EKG TAKE
WE FINALLY MADE IT HOME LATE YESTERDAY AFTERNOON. SHE IS STILL TAKING ANTIBIOTICS WHICH I CONVINCED THE NURSES I DID NOT NEED TAINING. LOL I TOLD THEM IF I HAD ANY QUESTIONS I WOULD JUST ASK ALICIA. HER GVH IS STILL GETTING WORSE. WE LEAVE FOR CINCINNATI A WEEK FROM TODAY. THANK YOU EVERYONE FOR SO MANY PRAYERS AND ALL OF THE SUPPORT.
MICHELLE


Thursday, December 24, 2009

A Pinky PROMISE

Anshon jr....................

Mommy and Daddy and Jayshon.....................

My Dad and Alicia...........................



Denise's daughter Cassie and Jayshon.......................


Alicia and Jayshon...............................

I can never break a Pinky Promise. Today was an awesome day. I am grateful for another Christmas with my family. I am very tired they wore me out so I am going to make this short but sweet so I can post pictures of the boys as I promised.
I hope everyone has a Special Christmas as I did today.
MERRY CHRISTMAS
MEE-MA



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)

Tuesday, December 8, 2009

LEAVING FOR CINCINNATI IN THE MORN

OK OK I AM SORRY AGAIN. I AM OVER DENISE'S AND ALL I HAVE HEARD IS HOW BAD I AM WITH UPDATING.

WE ARE SET TO LEAVE IN THE MORNING FOR CINCINNATI TO FOLLOW UP WITH DOC DAVIES. ALICIA STILL IS BATTLING GVHD IN HER MOUTH, IT LOOKS BETTER TODAY BUT A COUPLE OF DAYS AGO IT WAS NOT LOOKING TO GOOD. SHE IS STILL ON ALOT OF STEROIDS, BUT THE PLAN IS TO START WEENING, SO MY FINGERS ARE CROSSED. ALICIA IS EATING US OUT OF THE HOUSE. HER CHEEKS LOOKS LIKE CHIPMUNKS.

ALICIA WENT TO THE KIDNEY DOC THIS MORNING AND THE BIGGEST ISSUE WAS THE AMOUNT OF PROTEIN IN HER URINE. WE WILL FOLLOW UP IN JANUARY. DOC DAVIES IS NOT TO WORRIED ABOUT HER KIDNEYS.


I HAVE BEEN FEELING GOOD MY SELF. I HAVE AN APPOINTMENT WITH MY CANCER DOC AT THE END OF THIS MONTH. I WILL LET EVERYONE KNOW HOW IT GOES (PROMISE).

PLEASE REMEMBER A FRIEND OF OURS HER NAME IS CHARISSE, I MET HER AT CAMP THE FIRST YEAR WE WENT. SHE PASSED AWAY LAST WEEK FROM FA. PLEASE KEEP HER SON ISAAC AND HER HUSBAND ALAN IN YOURS PRAYERS. SHE IS ALREADY MISSED DEARLY.


MEE-MA