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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, September 16, 2009

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HELLO EVERYONE AND I AM SO SORRY ABOUT NOT UPDATING SOONER. ALICIA AND I ARE FINALLY DOING A LITTLE BETTER. I AM STILL HAVE TERRIBLE PAINS IN MY SIDE BUT THE DRAIN LINE THAT WAS INSERTED IN MY SIDE TO DRAIN ANY FLUID BUILD UP WAS REMOVED LAST THURSDAY. I AM HOPING I AM NOT BUILDING UP FLUID AGAIN AND WE WOULD HAVE TO START ALL OVER, I HAVE A CT SCAN ON MONDAY TO CONFIRM THAT. I ALSO SEEN THE CANCER DOCTOR HERE I KANSAS AND I LIKE HIM A LOT. HE IS COMMUNICATING WELL WITH DR RICHARDS IN CINCINNATI. I HAVE ANTHER APPT WITH HIM AFTER THE CT. THEN ITS ON TO THE LIVER AND KIDNEY SPECIALIST FROM THERE.


ALICIA HAS A HORRIBLE COUGH RIGHT NOW. SHE SEEN HER DOC HERE YESTERDAY AND THEY TESTED HER FOR THE SWINE FLU AND OTHER THINGS BUT ALL TESTS WERE NEGATIVE!!!!!!!!!!!!!! WE HAVE BEEN SPENDING A LOT MORE TIME TOGETHER NOW THAT I AM FEELING A LITTLE BETTER. SHE IS RIGHT HERE WITH ME NOW, BOY I MISSED HER SO MUCH WHEN ALL OF THIS WAS HAPPENING!!!!!!!!!!!!


WE ALSO MOVED IN THE TIME I HAVE NOT UPDATED. MY LEASE WAS UP IN THE APARTMENT AND I FOUND SOMETHING A LITTLE CHEAPER AND WITH ME NOT WORKING I WILL TAKE ANYTHING CHEAPER.


ONCE AGAIN I AM SO SORRY FOR NOT UPDATING. I REALIZE THERE ARE MANY PEOPLE WHO CARE AND WORRY ABOUT US AND I AM SORRY. I WANT TO SAY A SPECIAL THANKS TO DIANE FOR THE CARD YOU SENT.... IT MADE MY DAY!!!!!!!!!!!!

MICHELLE

Friday, August 28, 2009

P.S.

I WANT TO SAY A VERY SPECIAL THANKS TO DENISE FOR BEING THERE FOR US EVEN THOUGH SHE IS SICK HERSELF. SHE IS 100% THE BEST!!!!!! ALSO THANKS DENISE FOR KEEPING EVERYONE UPDATED WHEN YOU KNEW I COULDN'T

MICHELLE

a quick update

Hello everyone this is Michelle and I wanted to let everyone know that I am ok. I have been in and out of the Hospital for the past month as Alicia has as well. We were both discharged yesterday and she is staying with Erika. I am still in a very lot of pain and I have a drain tube sticking out of the right side of my abdomin. Alicia seems to be feeling very well again but she is still on anti-biotics for the bacteris they did find. I have follow up appointments all next week and the following so I will let everyone know all of the details just as soon as I find out my self. I just wanted to Thank everyone for so many prayers and ask for them to keep coming!!!


Michelle

Monday, August 24, 2009

*******update******

ALICIA IS OK. SHE IS STILL IN THE HOSPITAL. SH HHE GOT MOVED TO A REGULAR ROOM AND OUT OF INTENSIVE CARE AROUND 6 LAST NIGHT. NOONE IS FOR SERTAIN WHAT MADE HER FIGHT FOR AIR. HER NUMBERS ARE GOOD EXCEPT KIDNEY NUMBERS ARE ALITTLE HIGH. ITS UPSETING MICHELLE A GREAT DEAL THAT SHE CAN NOT BE WITH ALICIA. ERIKA HAS BEEN THERE THE WHOLE TIME EXCEPT WHEN I CAME UP TO GIVE HER A BREAK FOR A FEW HOURS. MICHELLE IS ALSO STILL IN HOSPITAL. THE CT SHOWED FLUID STILL. MULTIPLE DRS SAY ALL THE PAIN IS FROM HAVING 2 SURGERYS BACK TO BACK AND IS TAKING LONGER TO HEAL. IT IS HURTIN MICHELLE A GREAT DEAL THAT SHE CAN NOT BE THERE FOR ALICIA. THEY DID PUT A BIGGER DRAINAGE TUBE IN HER BUT SHE CAN GO WITH THAT AND MAY POSSIBLY GO HOME TONIGHT OR TOMORROW............................................DENISE

Sunday, August 23, 2009

YESTERDAY WAS A TOUGH NIGHT

YESTERDAY ALICIA WAS YELLING FOR HER MAMA AND ERIKA RAN TO HER ROOM AND SHE TOLD HER MAMA COULDNT BREATH.SO ERIKA TOOK HER TEMP AND IT WAS 102* SHE THEN TOOK HER TO THE ER. HER FEVER WENT DOWN AND SHE IS FEELING BETTER NOW. MICELLE IS HAVING ANOTHER TUBE PUT IN SINCE THE NURSE PULLED THE FIRST ONE OUT. FIRST THEY WILL DO A CT TO SEE HOW MUCH FLUID IS LEFT. WELL I AM SO VERY EXHAUSTED FROM SCHOOL KIDS AND GOING FROM MICHELLE AT ST JOE HOSPITAL TO ALICIA AT WESLEY......IT DRAINS A PERSON..............DENISE