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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, August 14, 2008

DAY +56

O MY WHERE TO BEGIN.................................... I GUESS THE BEGINNING WOULD BE THE BEST.

YESTERDAY STARTED OFF TO BE AN AWESOME DAY. ALICIA WOKE UP ( WITH NO FEVERS AGAIN. ) SHE WAS SMILING AND SHE LOOKED THE BEST SHE HAS TO ME IN A VERY LONG TIME.

THERAPY CAME IN AROUND 11 AM AND WANTED TO WORK WITH ALICIA AND OUT OF THE BLUE I SAID "I WANT HER UP OUT OF THIS BED AND OUT OF THIS ROOM, THAT WOULD BE THE BEST THERAPY FOR HER." SO I THROUGH SOE PJ'S ON HER AND DOWN TO THERAPY WHE WENT........................ HERE ARE PICTURES OF PROOF..............



SHE WAS HAVING ALOT OF PROBLEMS STANDING UP STRAIGHT, AND SHE ONLY MADE IT TO THE ELEVATORS WALKING. SHE KEPT SAYING I CAN'T, I CAN'T. BUT SHE DID!!!!!!!!!!!!!!!!!!!!!!!! TODAY OUR PLANS ARE TO ONCE AGAIN HAE OUR PRINCESS BALL, BUT THIS TIME I HAVE SAID I WANT IT DONE IN THE THERAPY ROOM DOWN STAIRS SO I CAN KILL TWO BIRDS WITH ONE STONE, BUT WISHFUL THINKING AGAIN.......

LAST NIGHT ALICIA'S TUMMY WAS HURTING ALOT ALOT MORE THAN USUAL. I CRAWLED IN BED WITH HER AND WAS CUDDLING HER AND THE NEXT THING I KNOW SHE WAS WAKING ME UP AND TELLING ME TO GET IN MY OWN BED CAUSE I WAS SNORING. LOL

I WENT TO HOOK BACK ON ONE OF HER LEADS TO THE MONITOR AND NOTICED ALICIA HAD A RASH ON HER CHEST SO I STARTED LOOKING A LITTLE MORE AND SHE HAS SOME ON HER NECK AND HER BACK. IT REALLY IS NOT ITCHING HER, THE DOCTORS ARE GOING BETWEEN IF IT IS A REACTION TO A MED OR IF IT IS MORE GVH. THEY HAVE BEEN GIVING HER BENADRYL AND STEROID CREAM TO COVER BOTH UNTIL THEY FIGURE OUT WHICH OF THE TWO IT IS.

NO I AM NOT DONE........I FINALLY GOT HER TUMMY CALMED DOWN AFTER ONE OF THE HUGEST POOPS I HAVE EVER SEEN, AND THEN ALICIA STARTED OUT OF NOWHERE CRYING AND SAYING I WAS MEAN TO HER AND DID NOT LOVE ANY MORE AND I WAS A BAD GIRL AND THAT NE NE CAN NOT COME SEE ME ANY MORE AND THAT I MADE HER CRY.............. SO ONCE AGAIN I CRAWLED IN BED WITH HER AND CONVINCED HER THAT SHE WAS THE MOST IPORTANT PERSON TO ME AND THA TI LOVED HER TO ETERNITY AND THAT I WAS SOOO SORRY I MADE HER CRY AND I BEGGED HER TO PLEASE LET NE NE STILL COME SEE ME, WE GOT ALL OF THAT BEHIND US AND FINALLY AROUND ONE AM SHE WAS ASLEEP ( THEY SAY IT WAS CAUSED FROM THE STEROIDS NOT ME BEING MEAN TO HER )

STILL NOT DONE YET................... AROUND ONE THIRTY I WAS FINALLY DOSING OFF WHEN THE NURSE WOKE ME UP AND SAID THAT ONE OF ALICIA'S BLOOD CULTURES HAD CAME BACK AND IT HAD SAID THERE WAS A POSTIVE RESLUT THAT SOME TYPE OF BACTERIA WAS GROWING IN THE WHITE LOOMAN IN HER CENTRAL LINE. SHE WANTED TO LET E KNOW THAT THEY WERE GOING TO START HE ON ANOTHER ANTIBIOTIC, WHICH MEANT MORE VITALS, WHICH MEANT NO SLEEP. ALL I COULD DO WAS LAUGH..... I SAID " YOU HAVE GOT TO BE KIDDING ME". I SAID "OK PLEASE DIRRECT ME TO THE 10TH FLOOR" I THINK I WILL JUST JUMP LOL.... BUT KNOWING MY LUCK I WOULD JUST BREAK BOTH OF MY LEGS AND THAT WOULD PROBABLY HURT ALOT!!!!!!!!!!!!!!! AT LEAST I STILL HAVE MY SENCE OF HUMOR!!!!!!!!!!!

I DON'T KNOW JUST WHAT EXACTLY IS GOING TO HAPPEN WITH THE INFETION IN HER LINE YET. HOPEFULLY THE ANTIBIOTIC WILL GET RID OF IT OR I HEARD THAT THEY WILL HAVE TO TAKE IT OUT AND PUT IN A PIC LINE WHICH IS NOT AS GOOD AS THE C-LINE. I WILL LET EVERYONE KNOW JUST AS SOON AS I FIND OUT.

PLEASE PRAY FOR SLEEP FPR ME. ALICIA IS ASLEEP NOW AND I TOLD EVERYONE NOT TO BOTHER HER IF YOU ARE NOT PUTTING HER MEDS IN OR IF SHE STOPS BREATHING. SHE NEEDS REST VERY BAD. ERIKA AND ANSHON WILL BE HERE A WEEK FROM TOMORROW WO I KNOW I HAVE REST COMING SOON.

THANKS FOR ALL OF THE SUPPORT AND PRAYERS.

2 comments:

Anonymous said...

Dear Michelle and Alicia,
I hope you are both having a very restful day. Thanks for sharing the photos. Love, Dianne

Teresa said...

Oh, woman, you make me laugh! Well, of course, not all of it made me laugh, but the funny parts did. If you tried jumping off, you'd probably trip and break both of your legs before you even jumped and you'd end up dangling over the edge, with your clothes stuck on some big nail or something, unable to fall. ha!

Poor Alicia! Good job on the walking, but it must get really old for her (and you) with all the pain she is in. I hope that they are able to help the infection go away, deal with the rash, and that her tummy can quit hurting soon. That must've been hard with her crying and so upset at you. Those steroids sound like no fun!

Hang in there guys. Thanks for the update. I love reading them!

Love,
The Clifton's