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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.



Friday, June 20, 2008

Day +1

YESTERDAY WAS A VERY GOOD DAY!!!! IT TOOK ALL OF 25 MINUTES FOR ALICIA TO GET HER CELLS. SHE IS NOW B+ AND NOT O. SHE DID VERY WELL DURING THE TRANSPLANT AND THE ONLY PROBLEMS SHE HAD DURING THE DAY WAS WITH HER BP. (IT SEEMS LIKE HER BP HAS BEEN GIVING US PROBLEMS EVERY DAY). THEY ENDED UP GIVING HER SOME DIFFERENT MED AND HER BP CAME DOWN AND HAD STAYED DOWN SINCE.

THE DOCTOR SAID YESTERDAY THAT THE NEXT THREE WEEKS WILL BE THE MOST CRITICAL..... UNTIL HER CELLS START TO GRAFT THEY WILL WATCH HER VERY CLOSE, SHE WILL BE GETTING THE MOUTH SORES AND THE HAIR LOSS SOON. I THINK THE MORPHINE IS KEPING HER VERY COMFORTABLE FOR NOW THOUGH. PLEASE CONTINUE TO PRAY THAT HER CELLS START TO GROW SOON!!!!!!!!!!

ALICIA WOKE UP TODAY IN A VERY GOOD MOOD AGAIN, WHICH IS GOOD NEWS TO ME. WE ARE WATCHING DR. DOOLITTLE 3, AND NE NE SHOULD BE OVER HERE SOON, SHE IS AT THE RMH. I HAVE NOT WANTED TO LEAVE ALICIA AT NIGHT SINCE HER BP EPISODE THE OTHER NIGHT, I FEEL LIKE I SHOULD BE HERE FOR HER JUST ENCASE SHE NEEDS ME.

I FIMD MYSELF THINKING ALOT ABOUT CAMP SUNSHINE. I SOOOOO HATE THAT WE WILL NOT BE THERE THIS YEAR. THAT IS THE ONE TIME OF THE YEAR THAT I FEEL LIKE I CAN TOTALLY BE MYSELF AND TALK OPENLY TO PEOPLE WHO UNDERSTAND AND IS GOING THROUGH THE SAME THING. IT MAKES ME FEEL LIKE I RELIEVE SO MUCH INSIDE OF ME AND HELPS SO MUCH WITH THE YEAR THAT FOLLOWS. ALICIA GOT A VERY CUTE CABBAGE DOLL FROM MARY ANN YESTERDAY (HE FIRST CABBAGE DOLL) ITS NAME IS MEKALA, ALICIA LOVED IT!!!! ALICIA GOT VERY ATTACHED TO MARY ANN THE FIRST YEAR WE ATTENDED CAMP IN 2005. WE WILL BE THERE IS 2009, AND I CAN NOT WAIT!!!! THANKS MARY ANN.

PRAY FOR ANOTHER GOOD DAY!!!!

MEE-MA

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