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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.



Thursday, April 24, 2008

April 2008 entries

Sunday, April 27, 2008 5:16 PM CDT

THE PAST THREE DAYS HAVE BEEN HARD. BUT TODAY HAS BEEN BETTER AND I KNOW TOMMORROW IS ALMOST HERE. I KNOW NOW THAT I WLL BE ABLE TO OVERCOME ANY OBSTACLE, AND I FEEL I CAN BE STRONG FOR ALICIA.

ERIKA HAS BEEN HAVING A HARD DAY TODAY. IT HURTS ME SO BAD TO SEE ALL THE WORRY ON HER FACE. SHE IS SPENDING ALOT OF TIME WITH ALICIA THIS WEEKEND, THEY LOVE EACHOTHER SO MUCH.

TOMORROW IS GOING TO BE A BUSY DAY. I WANT TO BR ABLE TO GET ANY OF THESE LEGAL ISSUE'S WE ARE HAVING BEHIND US ABOUT ME BEING ABLE TO MAKE DECISIONS ON ALICIA'S BEHALF DURING TRANSPLANT. I AM SURE I WLL BE ON THE PHONE ALOT WITH KARI TOMORROW FROM CINCINNATI.

ANOTHER WORRY ON MY MIND ALOT IS MAKING SURE ERIKA CAN GET THERE AS OFTEN AS SHE CAN. I CHECKED ONLINE AND IT IS $550 FOR A ROUND TRIP TICKET TO CINCINNATI, BUT I FIND OUT TOMORROW ALSO IF I HAVE CONQUERED THAT ISSUE AS WELL. I JUST WANT EVERY CONCERN PUT BEHIND ME SO I CAN FOCUS AND GETTING MYSELF STRON FOR ALICIA.

I KNOW SHE WILL NEED MY EVERY IOTA OF STRENGTH,COURAGE AND COMFORT TO GET THROUGH THIS, AND I MADE A PROMISE TO HER WHEN SHE WAS FIRST BORB THAT I WILL ALWAYS BE WITH HER AND NEVER LEAVE HER AND I PROMISE EVERY TIME SHE OPENS HER EYES SHE WILL SEE ME AND THERE WILL NOT BE A SECOND IN HER LIFE WHERE I WILL NOT BE THERE. SHE IS MY EVERYTHING.

SHE IS ASLEEP RIGHT NOW LAYING BESIDE ME. SHE LOOKS SO SMALL. SHE IS SOOOOOO BEAUTIFUL. I LOVE HER WITH ALL MY HEART.

MEE-MA MICHELLE


Thursday, April 24, 2008 8:38 PM CDT

WELL TODAY IS ONE I WILL REMEMBER FOR A LONG TIME (BUT HOPEFULLY NOT FOREVER).

THE CALL CAME TODAY THAT WE HAVE BEEN KNEW WOULD COME FOR OVER FIVE YEARS NOW. ALICIA IS GOING TO TRANSPLANT, WE HAD ANOTHER CBC DONE THIS MORNING AND DR DAVIES FEELS IT IS TIME TO MOVE TO TRANSPLANT.

SHE SAID ALICIA NEEDS TO BE THERE THE WEEK AFTER ERIKA HAS THE BABY. ERIKA IS ALREADY SCHELED FOR A C-SECTION ON MAY 19TH, SO THEY ARE LOOKING TO START HER PRE TRANSPLANT WORK UP THE WEEK OF THE 26TH, AND TRANSPLANT DIRRECTLY AFTER THE FIRST WEEK OF JUNE, SHE SAID SHE WOULD FEEL BETTER THAT WAY BECAUSE ALICIA HAS A PERFECT COD ALREADY.

I THOUGHT I HAD MYSELF READY FOR THAT CALL BUT I WAS WRONG. TODAY HAS BEEN A VERY HARD DAY FOR ME AND ERIKA. BUT TOMORROW IS ALMOST HERE AND IT IS A WHOLE DIFFERENT DAY AND I KNOW I HAVE TO PULL MYSELF TOGETHER.

SO MUCH HAS BEEN GOING THROUGH MY MIND, ERIKA WILL STILL BE IN THE HOSPITAL OR JUST HOME WHEN WE HAVE TO LEAVE, THE BABY WILL NOT EVEN BE A WEEK OLD. AND ERIKA WILL BE RECOVERING FROM A C-SECTION.

WE HAVE SO MUCH TO HANDLE AND ONLY THREE WEEKS TO DO IT. I HAVE NEVER BEEN SOOOOO SCARED IN MY LIFE.

PLEASE KEEP ALICIA IN YOUR PRAYERS, SHE IS MY VERY BEST FRIEND.

MEE-MA MICHELLE


Sunday, April 20, 2008 10:22 PM CDT

WE HAD A VERY GOOD WEEKEND, I SPENT ALOT OF TIME WITH MY TWIN SISTER, DENISE. SHE MADE ME SIT DOWN AND WATCH A NEW MOVIE THAT JUST CAME OUT CALLED TODD SWEENEY. I DID NOT LIKE IT TOO WELL BUT DENISE THOUGHT IT WAS A VERY GOOD MOVIE, TO MUCH SINGING FOR ME.

ALICIA HAD ANOTHER CBC DONE ON THURSDAY AND HER PLATELETS ARE DOWN TO 12,000 NOW. THIS HAS ME VERY WORRIED BUT AS EVERY KNOWS HER PLATELETS HAVE HAD ME WORRIED FOR A LONG TIME. DR DAVIES WANTS ANOTHER COUNT DONE IN ONE WEEK SO HERE I AM DOING THE WAITING AND WORRYING GAME AGAIN. I SO HOPE THEY GO BACK UP BUT IT HAS BEEN SO LONG SINCE I HAVE SEEN THAT. HER OTHER COUNTS HAVE DROPPED ALSO, HER HB IS AT 9.9 WHICH DROPPED A LITTLE MORE THAN USUAL WHICH HAS ME WORRIED ALSO. I WILL UPDATE ON HER COUNTS JUST AS SOON AS I GET THE RESULTS THIS THURSDAY.

SORRY I HAVE GOT ANY OF OUR PICTURES FROM DISNEY ON HERE YET, THE CD'S ARE AT CHURCH, WHICH I HAD TO MISS THIS SUNDAY SO I WILL PICK THEM UP THIS WEEK.

I WILL UPDATE AGAIN SOON

MEE-MA

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