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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.



Friday, April 10, 2009

Day +295




Ok Ok I know it has been a whole week since I updated. I am truly sorry. My mom called this morning to let me know how bad I have been neglecting Alicia's site. I never realized how time flies by so fast and how busy I would be when we got home.


Alicia's new Nurse, Lynn, came on Thursday and did her dressing change. It was a better job than the last two but it still left a lot of room for improvement. Wow how I miss the care in Cincinnati. Alicia was also getting sick at the end of last week. Her stools were very very loose and she was going all of the time. Dr Rosen had a lot of tests ran but I do not have any of the results yet and she seems to be feeling better.


I took her outside for a bit today to feed the birds and she was so happy. This summer is going to be very hard trying to keep her in.


We leave for Cincinnati a week from Monday. Everything is set and Wings of Hope is taking us again. They are such AWESOME people and I owe them a lot.


I promise to try to update more often. I truly am sorry.

2 comments:

Anonymous said...

With a name like that she'd BETTER be better!
This is very long but on this day of all days it's worth reading in it's entirety. Know that I'm always praying!
Isaiah 53:1-12 Who hath believed our report? and to whom is the arm of the LORD revealed? For he shall grow up before him as a tender plant, and as a root out of a dry ground: he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him. He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not. Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed. All we like sheep have gone astray; we have turned every one to his own way; and the LORD hath laid on him the iniquity of us all. He was oppressed, and he was afflicted, yet he opened not his mouth: he is brought as a lamb to the slaughter, and as a sheep before her shearers is dumb, so he openeth not his mouth. He was taken from prison and from judgment: and who shall declare his generation? for he was cut off out of the land of the living: for the transgression of my people was he stricken. And he made his grave with the wicked, and with the rich in his death; because he had done no violence, neither was any deceit in his mouth. Yet it pleased the LORD to bruise him; he hath put him to grief: when thou shalt make his soul an offering for sin, he shall see his seed, he shall prolong his days, and the pleasure of the LORD shall prosper in his hand. He shall see of the travail of his soul, and shall be satisfied: by his knowledge shall my righteous servant justify many; for he shall bear their iniquities. Therefore will I divide him a portion with the great, and he shall divide the spoil with the strong; because he hath poured out his soul unto death: and he was numbered with the transgressors; and he bare the sin of many, and made intercession for the transgressors.
Prayer Bears
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Anonymous said...

Vivit! He lives! Praying as always!
Job 19:25-27 For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God: Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.

1. I know that my Redeemer lives;
What comfort this sweet sentence gives!
He lives, He lives, who once was dead;
He lives, my ever-living Head.

2. He lives triumphant from the grave,
He lives eternally to save,
He lives all-glorious in the sky,
He lives exalted there on high.

3. He lives to bless me with His love,
He lives to plead for me above.
He lives my hungry soul to feed,
He lives to help in time of need.

4. He lives to grant me rich supply,
He lives to guide me with His eye,
He lives to comfort me when faint,
He lives to hear my soul's complaint.

5. He lives to silence all my fears,
He lives to wipe away my tears
He lives to calm my troubled heart,
He lives all blessings to impart.

6. He lives, my kind, wise, heavenly Friend,
He lives and loves me to the end;
He lives, and while He lives, I'll sing;
He lives, my Prophet, Priest, and King.

7. He lives and grants me daily breath;
He lives, and I shall conquer death:
He lives my mansion to prepare;
He Iives to bring me safely there.

8. He lives, all glory to His name!
He lives, my Jesus, still the same.
Oh, the sweet joy this sentence gives,
"I know that my Redeemer lives!"

Prayer Bears
My email address