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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.



Monday, April 13, 2009

Day +298




I hope everyone has a Great Easter. It rained all day where we live, but we still had a great day anyway. I am actually kind of glad it did rain that way I didn't have to upset Alicia when she couldn't outside. We spent the day at Erika's and cooked a Ham and watched Slumdog Millionaire. Alicia looked soooo cute in her Easter dress. I had to put her hair bow on her strap to her mask since she don't have enough hair to hold one in yet......... I got it to stay in long enough to take the picture but as soon as she moved it fell right out. Ne Ne came up with the idea to clip it to her strap on her mask. I promised Dianne pictures... I hope this was fast enough :)
The boys got hair cuts (actually shaved) while we were there yesterday also. It was Jayshons first one. All of his little curls are all gone:( After Daddy was done with the boys hair Alicia wanted hers cut off again. Of course we didn't let her but it was cute. She said she wanted hers cut off like it was LOL.........

They both are still soooo cute!!!!!!!!!!!!!!!!!!!
We leave for Cincinnati a week from today. I have so much fear that we won't come back in three days like planned. I am sure we will it is just the first time back since we got home and we were there sooo long. Alicia still have very loose stools, and she is still coughing but it sounds more like a dry cough now. But still no fevers which is good.
I am excited though to see all my friends at the RMH. I plan on going to see everyone as soon as I get there. I miss them so much.
Take care and thank you for all of the support.

12 comments:

Charisse said...

Happy Easter my love! We had a good Easter, thank you! Alicia looks very pretty in her photo and the boys do look very cute. Enjoy your week.
Love Charisse

Dianne said...

Thanks for the photos Michelle. Your grandkids are so adorable. Thinking of you....Dianne

Anonymous said...

She's beautiful and the boys are adorable!
Praying right now!
Isaiah 40:28-31 Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer BearsMy email address

Mary Ann Fiaschetti said...

Michelle,
Alicia looked so beautiful in her Easter outfit. We'll be praying for a very safe, short and productive visit to Cincinnati.
Blessings, hugs, & love,
the Fiaschetti FAmily

Anonymous said...

Know that you're in my thoughts and prayers!
Psalms 91:9-12 Because thou hast made the LORD, which is my refuge, even the most High, thy habitation; There shall no evil befall thee, neither shall any plague come nigh thy dwelling. For he shall give his angels charge over thee, to keep thee in all thy ways. They shall bear thee up in their hands, lest thou dash thy foot against a stone.
Prayer BearsMy email address

Anonymous said...

He died that we might live! Praying hard right now!
Hebrews 2:9 But we see Jesus, who was made a little lower than the angels for the suffering of death, crowned with glory and honour; that he by the grace of God should taste death for every man.
Prayer BearsMy email address

Anonymous said...

Continuing to pray in Seattle!
Lamentations 3:22-26 It is of the LORD'S mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. It is good that a man should both hope and quietly wait for the salvation of the LORD.
Prayer BearsMy email address

Anonymous said...

Praying right now!
Philippians 4:13 I can do all things through Christ which strengtheneth me.
Prayer BearsMy email address

Anonymous said...

Stopping by to let you know I'm still here praying.
Psalms 4:6-8 There be many that say, Who will shew us any good? LORD, lift thou up the light of thy countenance upon us. Thou hast put gladness in my heart, more than in the time that their corn and their wine increased. I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety.
Prayer BearsMy email address

Anonymous said...

Everything's okay, right?
Continuing to lift up prayers!
Psalms 119:49-50 Remember the word unto thy servant, upon which thou hast caused me to hope. This is my comfort in my affliction: for thy word hath quickened me.
Prayer BearsMy email address

Anonymous said...

Always lifting up prayers!
Romans 5:1-5 Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.
Prayer BearsMy email address

Anonymous said...

Praying that the Lord will always be with you no matter what the future holds.
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 BearsMy email address