Once again I start off by apologizing for not keeping everyone up to date on how we are doing. I have logged on my computer a million times in the past month and the anxiety gets so bad I just turn it off. Sometimes I believe we can live in this imaginary fairy tale and as long as I block out reality then it will be easier to cope, but that is not true. Reality with FA is every day in our life and many many of our friends also.
It is so hard to believe that Alicia will be 7 years old in two days. I remember the times when 7 seemed so long away and the times when I never knew if it would even come. She is getting to be such a "BIG" "LITTLE" girl.
The "BIG" part I am not exaggerating either. Alicia is back on steroids now and she is eating non stop. They finally took her off of the tpn at night and put her back on fluids over night due to her sugar level being to high now that she is on the steroids. When we were in Cincinnati a few weeks ago Alicia had a horrible case of GVH and it was in her mouth. Her little mouth was so sore but the steroids cleared it up in a few days but it also bought us another trip back to Cincinnati in a few weeks. We will be going back on the 9th of December to see Doc Davies. Hopefully she will start weening the steroids again then. Alicia also had an immune study done and the results were not what we wanted to hear. Usually a year post transplant your immune system should be working at 100% but with all of the complications Alicia had she is at best at 50% and she is going on two years post transplant so Doc Davies said NO restrictions will be lifted off of her til the earliest will be this summer. I just pray we get to make camp this year!!!!!!!!!!!!!!!!!!
I am feeling alot better. I have been seeing the doctor every week and the Cancer doc once a month, but I do feel alot better. I do have a few bad days though and I am learning how to just work through them myself.
Please everyone keep Dan and Nikki Mccarthy in your prayers. I read an update and I can just feel the pain my friend is feeling. We went through many difficult times together during transplant and they are very dear to me. Also Delia could be facing another transplant, she is a young lady I met at camp with FA so please keep her in your prayers.
HAPPY BIRTHDAY BABY GIRL
MEE-MA
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14 comments:
Happy birthday my most favorite Alicia in the whole world!!
I can't believe our girls are seven! I remember when they were 2.5 yrs old and meeting for the first time...
I'm so sorry about Alicia's results. That is SO disappointing. Do they think she'll end up engrafting fully with the new marrow? Or what do they think will happen?
I'm so glad you're feeling better. Keep on healing!
Our hearts and prayers are with you guys.
love, Teresa & Emma
thanks for the update!!!!!!!!! Always get concerned when there's so much time between posts.
HAPPY BIRTHDAY, ALICIA!!!!!!!!!!!! Hope you have a really special day!
Lifting up prayers!
Psalms 27:7-9 Hear, O LORD, when I cry with my voice: have mercy also upon me, and answer me. When thou saidst, Seek ye my face; my heart said unto thee, Thy face, LORD, will I seek. Hide not thy face far from me...thou hast been my help; leave me not, neither forsake me, O God of my salvation.
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Alicia, Happiest of birthdays! You are such a big girl now! 7 years old. And how beautiful you look on your bike.
Do you know you have the best Mee-ma in the whole world?
I'm actually glad for the breaks between updates. It means you are living life!!
Remember we are always praying for you both.
Hugs,
Mary Ann Fiaschetti
Peter's Mom
Thank you so very much for the update.
Happy birthday Alicia, you are such a beautiful grown up girl! I hope that you have a great day.
Michelle, I'm glad to hear that you're feeling better and that you're getting care for that cancer....just remember, the doctors work for you, so if you have any concerns or questions, make sure that they're dealt with by them.
I'm sorry to hear that Alicia had GVH but happy to hear that the steroids helped.
I pray that all will be well for both of you very soon. It's been a very long journey for both of you and you need a break (I know you hear me, God...please bring it to them sooner than later, ok.)
With love and prayers,
Mary Ann
Know that I'm here praying hard!
John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
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Know that you're always in my thoughts and prayers!
Psalm 4:8: I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety.
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So?! How was the birthday yesterday?! Hope it was fantastic!
Praying!
II Corinthians 1:3-4: Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.
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Always here praying!
Psalm 50:15: And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me.
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Stopping by to let you know I'm still here, still praying!
II Corinthians 12:8-10 For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
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Continuing to pray!
II Samuel 22:29-33 For thou art my lamp, O LORD: and the LORD will lighten my darkness.For by thee I have run through a troop: by my God have I leaped over a wall. As for God, his way is perfect; the word of the LORD is tried: he is a buckler to all them that trust in him. For who is God, save the LORD? and who is a rock, save our God? God is my strength and power: and he maketh my way perfect.
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Know that I'm continuing to pray!
Galatians 2:20 I am crucified with Christ: nevertheless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by the faith of the Son of God, who loved me, and gave himself for me.
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Know that you're always in my thoughts and prayers!
Ephesians 2:8-9: 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.
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Praying in Seattle!
Psalm 63:1-3: O God, thou art my God; early will I seek thee: my soul thirsteth for thee, my flesh longeth for thee in a dry and thirsty land, where no water is; To see thy power and thy glory, so as I have seen thee in the sanctuary. Because thy lovingkindness is better than life, my lips shall praise thee.
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Know that the Lord is always with you whatever happens! Praying!
Isaiah 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
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