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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.



Wednesday, September 24, 2008

Day +97

The scope went very well this morning except that transport got here early and I was in the shower so I had to rush and take my make up bag with me to the OR. So Alicia went in to get the scope with make up also, since she always wants me to make up her face when she sees me doing it.

The scope only took about 45 minutes and the GI doctor came out and told me the best news that I have heard in almost 70 days. He said that with looking at the scope that the GVHD in her tummy is GONE!!!!!!!!!!!!!!!!!!!! Yes you read it right it is GONE!!!!!!!!!!!!!!!!!!!!! He said the Biopsy will tell it all. I am soooooooooooooooooooo happy. They will also test with the Biopsy for other virus's and things to try to determine where the tummy pain and poop is coming from, but we have defeated the hurdle of GVH in her tummy and man was that a HARD hurdle. I am sure there will be other reasons for her tummy pain but the Doctor said that will be able to be fixed with the right medicine as soo as the results come back tomorrow.

The GVH of her skin is a different hurdle. They are saying that it looks alot better but to me it still looks pretty bad. It is spreading down her legs and arms but her back and tummy do look alot better. It is still peeling but not half as bad a it was. So hopefully this means that the meds she is on are indeed working to fight the GVH and all of this may soon be over.

She has not had a fever in a few days and I think they are going to take off the Vancomycin tomorrow which is usually when she spikes another fever so please keep your fingers crossed that this will not happen.

Dr Davie's talked today about starting to do her 100 day work up but I am not sure when that will be yet. Hopefully if its is indeed the sign I needed that everything is being treated as it should be then we might see the light at the end of the tunnel again soon.

As every might know our friend Samantha Mcarthy with FA also is inpatient here. I want to ask everyone to please include her in your prayers tonight. She is having issues with her tummy as well. She has caring bridge page. It is www.caringbridge.com/visit/samanthamccarthy
And please do not forget my little friend Abby patterson, she also is having alot of problems and needs every ones prayers.

5 comments:

Charisse said...

It is wonderful that her tummy shows no GVH! I pray that the biopsy results confirm what they saw! It would be great if the biopsies also show what has been wrong with her tummy. Well that was encouraging news. We will keep praying.
Love Charisse

Anonymous said...

It is great that Alicia's tummy isn't showing any GVH. As always, praying for Alicia and the whole family. Love, Dianne

Anonymous said...

Oh that's wonderful news!
Stopping by to let you know I'm praying!
Psalms 25:1-2a. 4-5 Unto thee, O LORD, do I lift up my soul. O my God, I trust in thee...Shew me thy ways, O LORD; teach me thy paths. Lead me in thy truth, and teach me: for thou art the God of my salvation; on thee do I wait all the day.
Prayer Bears

Anonymous said...

Wonderful news! Go Alicia Go! Praying!
Blessings and Bear Hugs,

Lynn said...

Know that you're always in my thoughts and prayers.
Psalms 59:16-17 But I will sing of thy power; yea, I will sing aloud of thy mercy in the morning: for thou hast been my defence and refuge in the day of my trouble. Unto thee, O my strength, will I sing: for God is my defence, and the God of my mercy.
Prayer Bears