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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.



Monday, August 4, 2008

DAY +47




MOMMY IS GONE!!!!!!!!!!!!!!!!! I SO HATED TO SEE ERIKA LEAVE. WE HAD SUCH A NICE WEEKEND. ONLY 18 DAYS LEFT UNTIL HER AND DADDY WILL BE BACK!!!!!!!!!!!
THE GOOD BYES WENT VERY WELL., ALTHOUGH I BELIEVE ALICIA DID NOT KNOW THEY WERE FOR REAL GOOD BYES. SHE TOLD HER MOMMY GOOD BYE AND GAVE HER KISSES AND HUGS, AND I WAS LIKE WOW THIS IS EASY. THEN I WALKED ERIKA ACROSS THE STREET TO MEET THE HOSPITAL SHUTTLE THAT WAS TAKING HER TO THE AIRPORT. WHEN I GOT BACK TO ALICIA SHE GAVE ME THIS STRANGE LOOK AND ASKED "WHERE IS MY MOMMY?" AND WHEN I TOLD HER SHE HAD TO GO BYE BYE AND FLY SHE BROKE OUT BAWLING. I FELT SO BAD BECAUSE SHE DID NOT UNDERSTAND THAT WHEN SHE WAS SAYING GOOD BYE.
WELL OF COURSE ALICIA HAD TO WAIT FOR ERIKA TO LEAVE TO GET A FEVER. SHE WAS FLIRTING WITH A FEVER ALL WEEK END BUT ABOUT ONE THIRTY THIS MOIRNING SHE GOT THE FULL BLOWN FEVER. TYLENOL DID NOT WORK SO I KEPT COLD RAGS ON HER HEAD LIKE MY MOM USED TO DO ME AND FINALLY BROKE THE FEVER AROUND SEVEN THIS MORNING. ALICIA IS ALSO COMPLAINING ALOT MORE ABOUT HER STOMACH HURTING. HER STOOLS ARE WORSE NOW THAN WHEN SHE FIRST GOT THE GVH. THIS IS REALLY STARTING TO GET FRUSTRATING!!!!!! IT IS LIKE WE TAKE TWO STEPS FORWARD AND THREE STEPS. IT SEEWMS LIKE WE HAVE NOT MOVED FORWARD IN ALMOST A MONTH. I KEEP GETTIGN TOLD THAT GVH IS A SLOW PROCESS AND I UNDERSTAND THAT BUT I THINK WE SHOULD SEE A LITTLE IMPROVEMENT BY NOW. WE ARE THREE DAYS UNTIL OUR HALF WAY MARK TO THE MAGIC 100 DAYS. I JUST WISH I KNEW WHAT IS GOING ON WITH MY BABY.
I FOUND OUT THAT DENISE IS BRING MY OLDEST SISTER KELLI UP HERE ON LABOR DAY WEEKEND. I AM SOOOOOOOOOOOOOO GLAD. ALICIA HAS BEEN ASKING ALOT LATELY TO SEE KELLI SO I KNOW THAT WILL MAKE HER VERY HAPPY. AND ALICIA IS ALWAYS HAPPY TO SEE NE-NE. ALICIA AND DENISE HAVE SUCH A SPECIAL BOND. I HAVE FOUND OUT THROUGH THIS THAT MY SISTER DENISE IS TRUELY MY BEST FRIEND. AND I CN NOT WAIT TO SEE MY OLDEST SISTER. I MISS KELLI SO MUCH. NOW ALL I HAVE TO DO IS WORK ON MY MOM AND MY LITTLE SISTER AND IT WILL BE EVEN BETTER.
WELL I AM VERY VERY TIRED AND ALICIA IS ASLEEP SO I AM GOING TO TRY TO REST ALSO. I WILL UPDATE IF I FIND OUT WHAT IS GOING ON. THERE IS ONE MORE THING THAT IS ALSO WORRYING ME AND THAT IS HER CBC THIS MORNING THEY DREW MORE BLOOD TO REPEAT IT BECAUSE IT HAS TO BE WRONG HERE IT WHAT IT IS AND WHAT IT WAS YESTERDAY................
WBC--TODAY--2.9 -- YEST--5.5
HGB--TODAY--13.5--YEST--8.7
PLAT--TODAY--34--YEST--66
ANC--TODAY--2.67--YESY--5.06
THOSE ARE SUCH BIG CHANGES SO I THINK THEY HAVE TO BE WRONG. AT LEAST I SURE HOPE SO. I WILL FIND OUT A LITTLE LATER.
THANKS FOR ALL OF THE PRAYERS. WE NEED ALOT NOW.....

4 comments:

Anonymous said...

Hang in there Michele and get some rest! Praying for relief from pain! (((Big Bear Hugs)))
Love you Sweet Alicia!
Blessings and Bear Hugs,

Charisse said...

I am glad the goodbyes went well. I am sorry Alicia didn't realise she was really saying goodbye.
Hang in there, Michelle. It is tough and we are praying. We are praying for the fever to go and for her blood results as well.
Love Charisse

Anonymous said...

Michele,

Your daughter is so beautiful! But even more beautiful than that is seeing her and Alicia together, grinning like nobody's business. What a beautiful sight. Thank you for sharing these pictures. I'm glad you had a good night's sleep, maybe even two. I don't write much but I check in on you guys every day.

take care,
rachel

Anonymous said...

Praying
Hebrews 12:1-2 Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us, Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God.
Prayer Bears