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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.



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

11 comments:

Anonymous said...

Forgot you knew Charisse, too....what a shock!
Thanks so much for updating!!!!!!!!!!!!!!!
Continuing to pray!
Psalm 63:4-7 Thus will I bless thee while I live: I will lift up my hands in thy name. My soul shall be satisfied as with marrow and fatness; and my mouth shall praise thee with joyful lips: When I remember thee upon my bed, and meditate on thee in the night watches. Because thou hast been my help, therefore in the shadow of thy wings will I rejoice.
Prayer Bears
My email address

Anonymous said...

Still here, still praying!
Deuteronomy 31:6 Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.
Prayer Bears
My email address

Anonymous said...

Praying right now!
Psalm 9:9 The LORD also will be a refuge for the oppressed, a refuge in times of trouble. And they that know thy name will put their trust in thee: for thou, LORD, hast not forsaken them that seek thee.
Prayer Bears
My email address

Anonymous said...

Continuing to pray!
Psalm 34:6-9 This poor man cried, and the LORD heard him, and saved him out of all his troubles. The angel of the LORD encampeth round about them that fear him, and delivereth them. O taste and see that the LORD is good: blessed is the man that trusteth in him. O fear the LORD, ye his saints: for there is no want to them that fear him.
Prayer Bears
My email address

Mary Ann Gormley said...

Hi Michelle and Alicia,

Thank you for updating. Hope that your visit to the hospital brought good news and am happy to hear that you're doing well also.

Wishing and praying only for the best for you and Alicia,
love,
Mary Ann

Anonymous said...

Know that you're in my thoughts and prayers!
Isaiah 43:1-3a But now thus saith the LORD that created thee, O Jacob, and he that formed thee, O Israel, Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the LORD thy God, the Holy One of Israel, thy Saviour...
Prayer Bears
My email address

Anonymous said...

He was born to live a perfect life in our place. Always here praying!
Isaiah 9:6 For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.
Prayer Bears
My email address

Anonymous said...

Praying for you right now!
Psalm 20:5-7 We will rejoice in thy salvation, and in the name of our God we will set up our banners: the LORD fulfil all thy petitions. Now know I that the LORD saveth his anointed; he will hear him from his holy heaven with the saving strength of his right hand. Some trust in chariots, and some in horses: but we will remember the name of the LORD our God.
Prayer Bears
My email address

Anonymous said...

Continuing to pray in Seattle!
Psalm 29:11 The LORD will give strength unto his people; the LORD will bless his people with peace.
Prayer Bears
My email address

Anonymous said...

Know that I'm praying!
Colossians 3:14-17 And above all these things put on charity, which is the bond of perfectness. And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful. Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord. And whatsoever ye do in word or deed, do all in the name of the Lord Jesus, giving thanks to God and the Father by him.
Prayer Bears
My email address

lucky said...

i pray to god for her speedy recovery from illness