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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 1, 2007

August 2007 entries

Friday, August 24, 2007 7:19 AM CDT

EVERY THING WENT WELL WITH ALICIA'S BIOPSY YESTERDAY. SHE WAS SUCH A BIG GIRL WHEN THEY PUT IN HER IV, SHE DIDN'T EVEN CRY THIS TIME.

NOW IS THE HARD PART.....THE WAITING......THE WEEK THAT IT TAKES TO FIND OUT ANY RESULTS SEEMS LIKE A MONTH. I JUST PRAY THAT THE RESULTS COME BACK OK!!!!!! I DID FIND OUT THAT HER PLATELET COUNT WAS DOWN TO 28,000 AND THAT HAS ME VERY WORRIED.

ALICIA IS DOING FINE AS OF NOW, WE DID HAVE TO MAKE A TRIP TO THE EMERGENCY ROOM THIS WEEK END, ALICIA WAS OUT SIDE RUNNING AND SHE STUBBED HER TOE WHICH TOOK OFF THE TOP OF ONE TOE AND HER TOE NAIL, OF COURSE I FREAKED... WITH HER PLATELETS SO LOW IT WAS HARD FOR ME TO GET IT TO STOP BLEEDING, I HAD THE HARDEST TIME WITH JUST A STUBBED TOE, SO I DON'T KNOW HOW I AM GOING TO GO THROUGH A TRANSPLANT WHICH WILL BE A 100 TIMES HARDER THAN A STUBBED TOE.

ANSHON IS GETTING SO BIG, ALICIA AND HIM ARE SO CUTE WHEN THEY PLAY TOGETHER, ALICIA CAN GET HIM TO GIGGLE SO HARD, I LOVE WATCHING THEM TOGETHER.

DEPENDING ON THE RESULTS FROM YESTERDAY'S BIOPSY HER NEXT ONE WILL BE DONE IN CINCINNATI AT THE END OF NOVEMBER. I WILL KEEP YOU UPDATED WHEN I FIND OUT ANY RESULTS.

MEE-MA


Tuesday, August 14, 2007 4:07 PM CDT

Hello,

Sorry it has been so long since I have updated on Alicia. We are getting ready to leave Camp SunShine right now. The hardest part about camp is the good-bye's.

Alicia had such a fun time. I know she drove every one crazy. She went up to every one at least ten times each and gave them a hug. She danced so much at the custume ball that I was tired from just watching. Alicia is such a happy litlle girl she never slows down. ( I promise every one I did not teach her how she was dancing). We are going to miss every one so much. I am already looking forward to next year.

I found out today that Alicia's next Biopsy is going to be Thurday, August 23rd, Dr. Williams said he wanted her next one done in Cincinnati in November depending if it is not sooner from the results of this one coming up next week. I have this felling we are getting very close to transplant. But I have hope now, Camp has helped me alot!!!!!!

I will keep every one updated on her Biopsy results just as soon as I get them.

Mee-Ma Michelle

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