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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.



Thursday, July 17, 2008

DAY +28

ALICIA FINALLY BROKE HER FEVER AROUND 4AM, SHE HAS ONLY HAD ONE MILD TEMP SINCE THEN BUT WITH TYLENOL IT WENT AWAY.

SHE IS ASLEEP RIGHT NOW AND HAS BEEN ALOT YESTERDAY AND TODAY, BUT I AM FOR SURE THE FEVER IS TAKING ALOT OUT OF HER AND MAKING HER TIRED. I JUST PRAY THA THE FEVER STAYS AWAY TODAY.

DR DAVIES JUST LEFT FROM CHECKING ON ALICIA. SHE SAID THEY ARE STILL NOT FOR SURE WHAT IS GOING ON YET, BUT THEY MAY WANT TO DO A SCOPE ON ALICIA. THEY ARE MENTIONING ALOT ABOUT GVH. (THAT IS WHAT I AM MOST SCARED OF). ALICIA HAS DIAREHHA VERY BAD NOW ALSO, SO ALL OF THE DOCTORS THINK IT IS GVH. PLEASE PRAY THAT IT IS NOT!!!!!

DENISE AND CASSIE JUST CALLED ME AND THEY ARE NOW IN CHICAGO. THEY LEFT KANSAS AT 7AM THIS MORNING. THIS WAS CASSSIE'S FIRST PLANE RIDE, I AM EXCITED TO HEAR ALL ABOUT IT. I SO HOPE ALICIA IS UP TO HAVING FUN WITH CASSIE THIS WEEEKEND.

THE NURSE JUST CAME IN AND GUESS WHAT............................ YOU GOT IT ................ANOTHER FEVER. GREAT. AND SHE CAN NOT EVEN HAVE ANY TYLENOL YET. POOR BABY. I WISH I COULD TAKE THIS ALL AWAY!!!!!!!!!!!!!!!!!!

ERIKA WILL BE HERE VERY SOON. I CAN NOT WAIT!!!!!!!!!!!!!!!!!! SHE TURNS 22 A WEEK FROM TOMORROW. THIS IS THE FIRST TIME IN HER WHOLE LIFE THAT I WILL NOT BE THERE FOR HER BIRTHDAY. I MISS HER SOOOOOOOOOOOOOOOO MUCH!!!!!!!!!!

PLEASE KEEP ALICIA IN YUR PRAYERS. I AM OFF TO KEEP ICE COOL RAGS ON HER LITTLE HEAD.

1 comments:

Anonymous said...

You are in my thoughts and prayers. Sending lots of love...Dianne