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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.



Tuesday, July 8, 2008

DAY+19



SORRY THE PICTURE IS KINDA FUZZY BUT THIS IS THE ONLY ONE I HAD TAKEN YESTERDAY. THIS IS OF HER AT THERAPY, SHE WALKED ALL THE WAY THERE AND IT IS ON THE 3RD FLOOR, SHE ID VERY WELL, BUT BY THE TIME WE MADE IT BACK TO THE ROOM SHE WAS WORE OUT SO WE DID NOT MAKE IT TO THE PLAY ROOM. SHE WENT RIGHT TO SLEEP WHEN WE GOT BACK. SHE DID WAKE UP A COUPLE OF HOURS LATER AND WANTED TO GO BUT BY THEN IT WAS CLOSED SO WE ARE GOING THIS EVENING. SHE DID GET TO WALK THE HALLS INSTEAD, AND THIS TIME SHE FOUND A LITTLE DORA BIKE AND STARTED RIDING IT. BOY WAS THAT A MISTAKE. I THOUGHT IT WAS HARD TO KEEP UP WITH HER WHILE PUSHING THE POLE WHEN SHE WAS WALKING, SO YOU CAN ONLY IMAGINE HOW IT WAS WITH HER ON A BIKE:) SO HOPEFULLY WE WILL HAVE ALOT MORE PICTURES TO POST TOMORROW OF HER IN THE PLAY ROOM.

WE WERE WOKE UP THIS MORNING AT 5:30 AM BECAUSE ALICIA'S LABS CAME BACK AND HER PLATELETS WERE DOWN TO 8,000. SO SHE NEEDED A TRANSFUSION. THEY WERE AT 22,000 YESTERDAY SO I DO NOT UNDERSTAND WHY SHE DID NOT GET THEM THEN, THEY SAID THEY WANTED TO SEE WHAT THEY WOULD DO, WHICH I GUESS THEY DID AND IT WAS THE REASON SHE HAD TO GET THEM SO EARLY THIS MORNONG. AT LEAST NOW I KNOW WHY SHE WAS SO TIRED FROM WALKING TO THERAPY.

HER ANC WENT UP AGAIN TODAY, THIS MORNING IT WAS AT .95!!!!!! HER WBC WENT TO 1.5 AND HBG IS AT 11.3. THEY ARE SLOWLY BUT SURELY GETTING HER BLOOD SUGAR UNDER CONTROL, BUT I DID HEAR THROUGH THE GRAPE VINE THAT I WAS GOING TO BE THE ONE TO GIVE HER THE INJECTIONS TODAY. (YIPEEE) NOW I WILL BE THE BAD PERSON:) HER CALCIUM LEVEL WAS ALSO LOW THIS MORNING SO THEY HAVE TAKEN MORE BLOOD TO RUN TESTS TO SEE WHAT IS GOING ON THERE.

GOOD NEWS!!!!!! WE GOT A POTENTIAL RELEASE DATE YESTERDAY FOR THIS MONDAY THE 14TH WHICH WILL BE DAY +25. I AM VERY EXCITED. EVEN THOUGH IT IS ONLY TO THE RMH AND NOT HOME AT LEAST WE WILL BE OUT OF THIS ROOM. I AM KINDA LEARY THOUGH BECAUSE EVERYTHING IS GOING SO WELL WITH ALICIA AND I JUST DO NOT WANT TO RUSH ANYTHING AND HAVE HER HAVE ANY SET BACKS AFTER SHE HAS DONE SO WELL. ALICIA IS MAKING THIS LOOK SO EASY, SO KEEP PRAYING EVERYTHING WILL GO AS WELL AS NOW IF WE ARE RELEASED MONDAY. THEY WILL BE WEINING HER OFF MORE MEDS AND CHANGING MORE TO ORAL BEFORE WE GET TO LEAVE.

THANK YOU AGAIN EVERYONE SOOOO MUCH. WE WOULD NOT BE WHERE WE ARE TODAY WITHOUT THE LORD AND ALL OF YOUR PRAYERS.

4 comments:

Anonymous said...

It is so great that Alicia is getting her energy back. You are all in my prayers. Dianne

Anonymous said...

Hello Alicia and Michelle,
I am so happy to hear Alicia is doing so well. You are both in my thoughts and prayers each and everyday. I just wish we could come to Cincy to see you both, but with Sarah having her own problems it makes it difficult. Michelle you hang in there you are doing a GREAT Job. I really enjoyed talking to you yesterday. I will call again soon. Love to both of you and hope to see you soon.

www.caringbridge.org/visit/sarahp

Love,
Lori and Sarah

Anonymous said...

Continuing to pray so very hard!
2 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.

Charisse said...

It is wonderful that Alicia is feeling more energised. Her ANC is incredible! Her white blood count is also great with how high it is already. That is so encouraging. I love you guys son much.
Love Charisse