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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, July 21, 2008

DAY +32

ALICIA HAD A VERY ROUGH NIGHT AGAIN. WHEN DENISE AND I SWITCHED PLACES AND I GOT BACK TO THE HOSPITAL, SHE LOOKED TO ME TO BE IN ALOT OF PAIN. EVERYTIME I CHANGED HER DIAPER OR EVEN TOUCHED HER SHE WRENCHED. SHE COMPLAINED ALOT ABOUT HER TUMMY HURTING SO I HAD THEM CALL THE DOC AND HE GAVE HER SOME MORPHINE WHICH SEEMED TO HELP ALOT.
ALICIA ALSO HAD TO BE PUT BACK ON INSULIN SHOTS LAST NIGHT. THEY ARE GIVING HER THE LANTIS EVERY 24 HOURS AND MORE UNITS AS NEEDED AFTER THEY CHECK HER SUGAR LEVEL EVERY FOUR HOURS. IT GOT AS HIGH AS 338.
ALICA IS GETTING EVEN MORE MEANER TO THE NURSES, SHE WAS ALREADY BEING MEAN BUT WITH THE DOSAGE OF STEROIDS DOUBLED SHE IS BEING EXTRA MEAN!!! HERE ARE SOME PICTURES DENISE GOT OF THE LOOKS SHE IS GIVING THE NURSES. THERE ARE STILL A FEW NURSES SHE IS BEING NICE TO.................

I ALSO HAVE TO SHOW THIS PICTURE OF DENISE..... I WONDER WHERE SHE IS GETTING THE IDEA TO GIVE BAD LOOKS????? DUH!!!!!!!!!!!!! BUT ACTUALLY SHE WAS DOING IT BEFORE DENISE GOT HERE SO SHE IS REALLY NOT TO BLAME BUT I JUST HAD TO GET PAY BACKS FOR HER TELLING EVERYONE IN THE POST THAT I NEEDED A SCOOTER TO MAKE IT THROUGH THE ZOO :)

THEY SHOULD BE ROUNDING ON ALICIA SOON SO I WILL PUT AN UPDATE IF I FIND OUT ANY THING DIFFERENT THAN WE ALREADY KNOW.

SHE DOES LOOK LIKE SHE IS FEELING A LITTLE BETTER THIS MORNING AND SHE EVEN JUST ASKED FOR A HOT DOG SO CROSS YOUR FINGERS THAT THIS IS A SIGN THAT WE ARE MOVING UPWARDS.

WELL THEY JUST DID ROUNDS ON ALICIA AND THEY SAID THERE IS NOT MUCH CHANGE WITH THE GVH YET. THEY DID SAY WE WOULD PROBABLY BE HANGING OUT HERE IN THE HOSPITAL FOR AT LEAST ANOTHER MONTH (WHICH I AM FINE WITH) I KNOW SHE IS IN THE BEST PLACE. THEY ALSO SAID THAT THEY ARE GIVING HER PLTELETS WHICH WERE DOWN TO 18,000 AND THEY NEED TO STAY ABOVE 50,000 SINCE THE BIOPSY AND SCOPE SHE HAD SATURDAY. THEY DID SAY THEY ARE GOING TO STOP HER GCSF BECAUSE HER ANC IS 2.49. GCSF IS A MED THAT HELPS TO BOOST ER ANC SO THEY WANT TO SEE IF AICIA CAN HOLD HER OWN. I SURE HOPE SHE CAN. THEY SAID HER BIOPSY REPOERT SHOULD BE BACK THIS AFTER NOON SO I WILL UPDATE LATER.

I AM OFF TO SAY GOOD BYE TO DENISE AND CASSIE THEY LEAVE IN AN HOUR. THANKS SO MUCH DENISE YOU WERE A HUGE HELP TO ME!!!!!!!!!!!!!

2 comments:

Charisse said...

I don't blame Alicia feeling agressive towards the nurses. With her feeling so flat, those nurses and doctors are the ones that represent what is happening to her and it is quite emotional and upsetting for the young one. I become very upset and I am an adult.
We are still praying for the GVHD to improve.
Bless you all,
Love Charisse

Anonymous said...

Keep your eyes on the Lord! Praying!
Psalms 5:3 My voice shalt thou hear in the morning, O LORD; in the morning will I direct my prayer unto thee, and will look up.
Prayer Bears