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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.



Sunday, July 11, 2010

alot has happened

Once again I am sorry about the time in between my updates. I hope everyone is doing well and many prayers to the ones who are not.

We got to attend Camp Sunshine this year. Alicia and I both enjoyed oursefs soooo much. It was a much needed time away besides being in the hospital. We seen many old friends and met many new ones. I was very very nervous and held my breath many times. The worse was having Alicia in the airport in Chicago. I kept her very close to me, and she was transported by wheel chair from gate to gate. We seen an old friend from camp in the Washington airport and he sat behind us during the flight from Washington to Portland. His name is Zac and he is 24 with FA. Alicia just loved him. Alicia also connected very well with a girl named Saundra, she met her three years ago at camp  and remembered her right away. And of course her favorite person of all times was there, Keith, no one ever compares to him. I was very excited to meet Russ Holden from Caddy for a Cure, he was there with his wife.

All went well the week we were there but of course when it comes to Alicia nothing goes so smooth. Two days after we were home she spiked a fever and had a HORRIBLE cough. We took her to the emergency room and they ran tests and it came back that Alicia  had contacted the Paraenfluenza three. That set us four days in the hospital but all is well now.


We will be back in Cincinnati on the 22nd for a week. cross your fingers its only for a week.

Thank you for all of the support and prayers.

Michelle

25 comments:

Dianne Ploetz said...

Thanks for update Michelle. Thinking of you!!! :) Dianne

Lynn said...

Thanks for the update! Glad you had a good time but so sorry you had to "pay" for it afterwards.
Lifting up prayers right now!
Psalm 31:1-3 In thee, O LORD, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me.
Prayer Bears
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Anonymous said...

Michelle,
Was great to see you both at camp..I am glad to hear Alicia is feeling better. When you said you will be in Cincy on the 22nd, Did you mean of July? Sarah and I will be there too. We leave on the 20th and her Biopsy is the Friday the 23rd of July. Talked with Tina and Keith the other day, we will see them while were there. I am still waiting for you to confirm me as a friend on FB. Love you Give Alicia a ((HUG)) from us.
Love
Lori and Sarah

Lynn said...

Praying!
Psalm 31:9-10, 14-15a Have mercy upon me, O LORD, for I am in trouble: mine eye is consumed with grief, yea, my soul and my belly. For my life is spent with grief, and my years with sighing: my strength faileth because of mine iniquity, and my bones are consumed...But I trusted in thee, O LORD: I said, Thou art my God. My times are in thy hand:
Prayer Bears
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Lynn said...

Praying!
Psalms 31:24 Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD.
Prayer Bears
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Lynn said...

Know that you're always in my thoughts and prayers!
Psalms 142:1-3a I cried unto the LORD with my voice; with my voice unto the LORD did I make my supplication. I poured out my complaint before him; I shewed before him my trouble. When my spirit was overwhelmed within me, then thou knewest my path.
Prayer Bears
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Lynn said...

Know that I'm still here praying!
Jeremiah 29:11-13 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you. And ye shall seek me, and find me, when ye shall search for me with all your heart.
Prayer Bears
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Lynn said...

Still here praying!!!!!!!!
Revelation 21:1-4 And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea. And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband. And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
Prayer Bears
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Lynn said...

Know that I'm always here praying!
Romans 15:4 For whatsoever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.
Prayer Bears
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Lynn said...

Still praying in Seattle!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Prayer Bears
My email address

Lynn said...

The Lord is with you right now, lifting you up, giving you strength! Always praying!
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 Bears
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Lynn said...

Know that you're in my thoughts and prayers!
Psalms 91:1-2 He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty. I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.
Prayer Bears
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Lynn said...

No matter what happens in life, the Lord has us wrapped up in His loving care. Praying!
Psalms 91:4 He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.
Prayer Bears
My email address

Lynn said...

Continuing to pray!
Psalms 91:14-15 Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him.
Prayer Bears
My email address

Lynn said...

Know that I'm still here praying!
Psalms 62:5-7 My soul, wait thou only upon God; for my expectation is from him. He only is my rock and my salvation: he is my defence; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God.
Prayer Bears
My email address

Lynn said...

Know that the Lord is always with you, wrapping His loving arms around you and holding on tight!
Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
Prayer Bears
My email address

Lynn said...

Know that you're always in my thoughts and prayers!
Psalm 32:6-8 For this shall every one that is godly pray unto thee in a time when thou mayest be found : surely in the floods of great waters they shall not come nigh unto him. Thou art my hiding place; thou shalt preserve me from trouble; thou shalt compass me about with songs of deliverance. Selah. I will instruct thee and teach thee in the way which thou shalt go : I will guide thee with mine eye.
Prayer Bears
My email address

Lynn said...

Always here...always praying!
Psalms 23:4-6 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.
Prayer Bears
My email address

Lynn said...

Lifting up prayers!
Romans 5:1-2 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.
Prayer Bears
My email address

Lynn said...

Continuing to pray!
Romans 5:6-9 For when we were yet without strength, in due time Christ died for the ungodly. For scarcely for a righteous man will one die: yet peradventure for a good man some would even dare to die. But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us. Much more then, being now justified by his blood, we shall be saved from wrath through him.
Prayer Bears
My email address

Lynn said...

Know that I'm here praying!
John 11:25-26: Jesus said unto her, I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live: And whosoever liveth and believeth in me shall never die. Believest thou this?
Prayer Bears
My email address

Lynn said...

Know that I'm always praying!
Ephesians 2:8-10 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast. For we are his workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them.
Prayer Bears
My email address

Lynn said...

Lifting up prayers in Seattle!
1 Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.
Prayer Bears
My email address

Lynn said...

Praying right now!
1 Peter 1:18-19 Forasmuch as ye know that ye were not redeemed with corruptible things, as silver and gold, from your vain conversation received by tradition from your fathers; But with the precious blood of Christ, as of a lamb without blemish and without spot
Prayer Bears
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Lynn said...

Continuing to pray!
Psalms 27:1, 4-5 The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?...One thing have I desired of the LORD, that will I seek after; that I may dwell in the house of the LORD all the days of my life, to behold the beauty of the LORD, and to enquire in his temple. For in the time of trouble he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock.
Prayer Bears
My email address