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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.



Wednesday, August 6, 2008

DAY +49

WE FINALLY HAD A GOOD NIGHT LAST NIGHT. AT LEAST I SLPET THROUGH IT ALL SO IT MUST OF BEEN GOOD!!!!!!!!!!!!!!!!!!

ALICIA HAD HER FEVER YESTERDAY UNTIL LATE IN THE AFTERNOON. SHE FINALLY ENDED UP GETTING RID OF IT AROUND 4PM AND FROM THAT TIME ON SHE HAD A BETTER DAY. SHE ATE A WHOLE BOWL OF RAMEN NOODLES, AND HALF OF A PUDDING AND ONE FRENCH TOAST STICK. I WAS SO HAPPY. SHE HAD NOT ATE THAT MUCH IN A WHOLE MONTH IT SEEMED LIKE.

FINALLY FINALLY FINALLY THEY FOUND OUT WHAT IS WRONG WITH HER. AFTER FOURTEEN MILLION TESTS THE ONE THAT CAME BACK POSITIVE WAS FOR THE ROTAVIRUS, ( STOMACH FLU ). SHE MUST OF HAD THIS FOR AT LEAST A COUPLE WEEKS NOW. THE DOCTOR SAID WITH THE COMPRIMISED IMMUNE SYSTEM SHE HAS AND NO ANTIBODIES TO FIGHT IT THAT IT WAS JUST GETTING WORSE. THAT MAKES SO MUCH SINCE AS TO WHY HER TUMMY KEPT HURTING MORE AND MORE AND HER POOP WAS NOTHING BUT WATER FOR SO LONG. IT WAS LIKE HER TUMMY WAS GETTING A DOUBLE WAMMY. SO SHE GOT AN EXTRA DOSE OF IVIG WHICH SHE HAS BEEN GETING EVERY OTHER WEEK AND IT HAS THE ANTIBODIES IN IT TO FIGHT THE ROTAVIRUS BUT WITH HER VERY FREQUENT AND VERY WATERY STOOLS SHE WAS NOT GETTING AS MUCH AS SHE WAS GETTING RID OF. AND THE NIGHT BEFORE SHE GOT THE EXTRA DOSE OF THE MED THAT FIGHTS THE GVHD SO HOPEFULLY THIS WILL HELP KICK IN AND MAKE HER BETTER. 9 THIS MORNING I COULD ACTUALLY SEE WHAT SHE ATE LAST NIGHT IN HER STOOL ) I KNOW THAT IS YUCKY BUT IT MADE ME EXCITED. ( HOW FUNNY THAT I GET EXCITED ABOUT POOP )

SHE NEVER WAS ABLE TO TAKE THAT GIANT PILL THEY WANTED HER TO TAKE, AND I BELIEVE YOUR HUSBAND WAS RIGHT TERESA ABOUT HOW IT WAS A TIME RELEASE CAPSULE. IT WAS GOING TO COAT THE LINING OF HER INTESTANTS TO HELP WITH THE GVHD JUST AS THE CREAM DOES WITH A GVH RASH.

TODAY FEELS LIKE IT IS GOING TO BE A GOOD DAY!!!!!!!!!!!! MAYBE BECAUSE I GOT SOME MUCH NEEDED REST. ALICIA REALLY LIKE THE NURSE WE HAD LAST NIGHT WHICH MADE IT ALOT EASIER. SHE HAS A FEW THAT SHE FAVORS AND EVEN SMILES AT.

16 DAYS UNTIL MOMMY AND DADDY COME. I AM SOOOOOOO HAPPY ABOUT THAT. ALICIA IS EXCITED ABOUT SEEING HER DADDY. AND I KNOW HE IS EXCITED TO SEE HER. HOPEFULLY WE KEEP GOING UP HILL AND WE WILL BE OUT OF THE HOSPITAL BY THEN.

I HOPE EVERYONE HAS FUN AT CAMP SUNSHINE. I HATE SOOOOOOOOOOOOOO MUCH THAT WE WILL NOT BE THERE. IT STARTS FRIDAY IT IS A CAMP THAT FA FAMILILES GET TOGETHER ONCE A YEAR AND THE KIDS HAVE ALOT OF FUN AND THE PARENTS GET ALOT OF EDUCATION AND THE FUTURE OF FA. AND I SEE LOTS OF FRIENDS AND AM ABLE TO VENT WHERE EVERYONE UNDERSTANDS EACH OTHER. I HOPE EVERYONE HAS FUN AND I CAN NOT WAIT TO HEAR ABOUT IT ALL AND THE FUN THE KIDS HAD.

THANKS AGAIN FOR ALL THE PRAYERS BEING SAID FOR ALICIA. THEY ARE BEING HEARD. IF IT GOES THIS WAY THEN MAYBE WE WILL BE HOME BY CHRISTMAS.

1 comments:

Charisse said...

That is wonderful that you had a good night's sleep. I am SO glad that they were able to find out what was going on. Rotavirus is a very nasty virus and can cause horrible fevers and terrible, watery diarrhoea. It is a wonder they had not tested for it long ago. It is the first thing they test Isaac for when he has those symptoms and Isaac has had that a number of times through his 5 years. Poor Alicia. It is not nice at all. I am so glad they found out. IVIG will be very helpful in helping her. It helps me but can make me feel fluey for a week afterwards. Has she been feeling unwell from IVIG or does she cope fine with it?
I hope to hear good news on the next update as well! We have prayer meeting tonight and will be praying for Alicia.
Love Charisse