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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, July 31, 2008

DAY +42

I CAN NOT BELIEVE WE HAVE BEEN IN THE HOPITAL FOR 50 DAYS TODAY. WE ARE ALMOST HALF WAY TO OUR 100 DAYS AND WE ARE STILL HERE. I HAVE NEVER REALLY BELIEVED THAT WE WOULD ONLY BE HERE FOR THE 100 DAYS. I HAVE ALWAYS FELT LIKE IT WOULD BE LONGER AND IT IS BEGINNING THO LOOK LIKE I AM RIGHT.

SORRY I DID NOT UPDATE YESTERDAY. I WAS TRYING TO CATCH UP ON SOME VERY MUCH NEEDED REST I HAVE BEEN LOOSING LATELY. AND IN BETWEEN THE REST I SPENT ALOT OF TIME PLAYING AND GETTING ALICIA SITTING UP AND EVEN TRIED TO GET HER OUT OF THE BED AND WALKING BUT THAT DID NOT WORK TO WELL. SHE CRIED VERY HARD AND SAID HER LEGS HURT. I AM GOING TO GET HER OUT OF BED EVERYDAY UNTIL SHE GAINS HER STRENGTH BACK. BESIDES ME TRYING TO MOTIVATE HER SHE ALSO HAD EVERYONE OF THE DIFFERENT THERAPISTS TRYING TO GET IN TO SEE HER SINCE HER SEIZURES THEY WERE ALL WORRIED ABOUT ANY DAMAGE AND WANTED TO MAKE SURE SHE WAS UP TO PAR IN ALL AREA'S. BESIDES HER LEGS AND ARMS HURTING SHE SEEMED TO BE DOING OK BUT ONLY TIME WILL TELL THEY SAY. ALICIA EVEN SURPRISED ME YESTERDAY. THE MEDICINE THAT THEY ARE GIVING HERE NOW INSTEAD OF THE CYCLOSPORIN THAT CAUSED THE PROBLEMS CAME YESTERDAY AND IT IS ONLY AVAILABLE IN PILLS. OF COURSE BEING THE PROTECTIVE ME-MA I TOLD THE NURSES THAT SHE HAS NEVER TAKEN A PILL EVER BEFORE AND I DID NOT THINKD SHE WOULD BE ABLE TO DO IT BUT I TOLD THEM I WOULD TRY AND OF COURSE ALICIA PROVED ME WRONG. SHE PUT IT IN HER MOUTH AND TOOK A DRING AND DOWN IT WENT. I WAS SOOOOOO HAPPY I WAS JUMPING UP AND DOWN. WE HAD TO CALL MOMMY AND NE-NE AND TELL THEM ALICIA TOOK HER FIRST PILL. OK I KNOW I SOUND RETAREDED BUT IT WAS REALLY COOL.

BUT OF COURSE ALICIA HAD TO GIVE US ANOTHER LITTLE BUMP YESTERDAY. I TOLD ERIN ( ALICIA'S NURSE, ONE SHE IS ACTUALLY NICE TO NOW) THAT IF EVERY THING WENT GOOD TODAY THAT I WOULD PROBABLY FALL OVER AND OF COURSE ALICIA SPIKED A FEVER. SHE KEPT IT MOST OF THE EVENING BUT FINALLY IT WENT AWAY WHEN SHE WENT TO SLEEP FOR THE NIGHT, SO MORE CULTURES AND TESTS TO SEE WHY SHE IS ALWAYS GETTING FEVERS.

SHE DID EAT A LITTLE YESTERDAY. IT STARTED OUT IN THE MORNING WITH HALF OF A BOWL OF CEREAL. I WA SO HAPPY BUT THEN SHE DID NOT EAT UNTIL LATER IN THE EVENING, SHE STARTED OUT WANTING SPEGHETTI SHE TOOK THREE BITES, THEN SHE DIDN'T WANT THAT SHE WANTED PUDDING, AFTER I GOT THE PUDDING AND TWO BITES LATER SHE DIDN'T WANT THAT SHE WANTED A HOT DOG AND MAC AND CHEESE, OF COURSE THAT DIDN'T TASTE GOOD THEN SHE WANTED DORA SNACKS, AFTER TWO BITES OF THOSE I FIGURED WITH A COUPLE OF BITES OF EVERYTHING SHE TRIED THAT SHE HAD GOT PLENTY IN HER TUMMY. BOY HOW I WISHED FOR CHICKEN NUGGETS LAST NIGHT.

ALICIA AND HER FAVORITE MEAL....................................


YESTERDAY ALICIA WAS ALSO ASKING FOR MY OLDEST SISTER KELLI ALOT. SHE MADE ME CALL HER AT WORK TWICE JUST SO SHE COULD TELL HER SHE WANTED TO GO OVER HER HOUSE, SHE KEPT TELLING HER TO PLEASE COME GET HER AND THAT SHE WANTED TO GO OVER HER HOUSE AND EAT. MY SISTER FELT SPECIAL, AND SHE PROMISED THAT SHE WOULD COOK ALICIA HER VERY FIRST MEAL WHEN SHE GETS ALL BETTER. THANKS KELLI. ( BUT SHE WILL PROBABLY JUST WANT CHICKEN NUGGETS SO IT SHOUDN'T BE THAT HARD TO FIX)

ALICIA ALSO GOT FOUR PACKAGES IN THE PAST TWO DAYS. THEY WERE THE MOST AWESOME PACKAGES. I SEEN HER SMILE SO MUCH EVERY TIME ANOTHER ONE CAME. THANK YOU SO SO SO MUCH EVERYONE FOR MAKING MY BABY SMILE. A SPECIAL THANKS TO MY MOM'S CO-WORKERS AT TALL GRASS IMAGING. THEY ALL WENT OUT AND GOT ALICIA SOMETHING AND SENT HER A HUGE BOX FULL OF AWESOME TOYS. WE ARE PLANNING A PRINCESS'S BALL THIS WEEKEND WITH HER MOMMY AND SHE CAN NOT WAIT TO WEAR HER WHOLE PRINCESS OUT FIT. I WILL TAKE ALOT OF PICTURES I PROMISE. HER IS A PICTURE WITH SOME OF THE THINGS THAT MY MOMS AWESOME FRIENDS SENT....................

ALSO ANOTHER HUGE SPECIAL THANKS TO KRISTIN, WESLEY, COLIN AND QUINN FOR THE OTHER HUGE BOX OF GIFTS YOU SENT ALICIA. SHE PLAYED WITH THE LIGHT BRIGHT ALL DAY YESTERDAY AND SHE LOVED THE SPINNING BALL THAT LIT UP ALONG WITH EVERY THING ELSE YOU SENT. ALICIA JUST KEPT SAYING "ITS MY BIRTHDAY" IT WAS SO CUTE. SHE LOOKED SO TIRED BUT SHE FOUND SOME ENERGY LEFT INSIDE TO SMILE ALL DAY BECAUSE OF ALL OF THE SPECIAL GIFTS SHE GOT. THANKS SO MUCH KRISTIN!!!!!!!! HERE IS A PICTURE OF SOME OF WHAT THEY SENT (NOT ALL IS IN THIS PICTURE, THERE WAS ALOT MORE)

I ALSO WANT TO TELL RONI AND RALPH, THEY ARE WHO I WORKED FOR FOR ALMOST ELEVEN YEARS AND ERIKA STII WORKS THERE. THANK YOU VERY MUCH FOR ALL OF THE GOODIES YOU SENT TO ALICIA. MY FAVORITE OF COURSE WAS THE SHIRT THAT SAID "MY HEART BELONGS TO GRANDMA" ALICIA LOVED THE LITTLE SUN DRESS. SHE MADE ME PROMISE THAT SHE CAN WEAR IT THE FIRST DAY WE LEAVE HERE. SINCE SHE TALKED THE NURSES INTO LETTING HER PUT HER OTHER NEW ONE ON A COUPLE OF WEEKS AGO SHE PROMISED SHE WOULD WAIT AND WEAR IT ON HER SPECIAL DAY. I PROMISE TO TAKE PICTURES AND SEND YOU SOME WITH HER PRETTY DRESS ON. THANK YOU ALSO FOR ALL OF THE SNACKS YOU SENT. I KNOW THEY ARE FOR ALICIA BUT I CAN NOT PROMISE SHE WILL GET THEM ALL TO HERSELF :)

AND LAST BUT DEFFINATLY NOT LEAST THANK YOU TO DIANNE AND MICHELLE AND JOHN FOR THE VERY CUTE SPONGE BOB PJ'S YOU SENT TO HER. SHE IS WEARING ONE OF THEM TOMORROW WHEN MOMMY COMES. I WILL TAKE PICS OF HER AND SEND SOME TO YOU ALSO. AND THANK YOU ALSO DIANNE FOR ALSO RISKING YOUR LIFE TO CHECK ON ALICIA. LOL :) I AM SO GALD YOGI DID NOT GET YOU.

WE GOT A VERY SPECIAL NEIGHBOR A FEW DAYS AGO. SHE ALSO HAS FA LIKE ALICIA, HER NAME IS SAM AND SHE HAS MADE ALICIA A VERY PRETTY STAINED GLASS FLOWER HANGER. IT IS SITTING ON THE OUTSIDE OF THE DOOR SINCE WE CAN NOT WIPE IT OR THE POAINT MIGHT COME OFF. SHE ALSO SENT THE CUTEST CARD SHE MADE OVER TO ALICIA THE FIRST NIGHT SHE GOT HERE. SHE STARTED HER CHEMO TWO DAYS AGO SO PLEASE EVERYONE KEEP HER AND HER MOM AND DAD IN YOUR PRAYERS.

I WILL UPDATE TOMORROW AFTER ALICIA'S BIG DAY. NOT ONLY IS MOMMY COMING BUT KAYLA AND WILL ARE GOING TO BE HERE AND KAYLA IS GOING TO STOP AND SEE ALICIA. (FINALLY SOMETHING TO LOOK FORWARD TO)

THANKS AGAIN TO EVERYONE FOR ALL OF YOUR SUPPORT. AND PRAYERS FOR ALICIA. I KNOW I HAVE SAID THIS ALOT OF TIMES BUT I COULD NOT DO THIS WITH OUT ALL OF THE SUPPORT I HAVE GOTTEN

7 comments:

Teresa said...

I love all the photos! It's great to read how happy all the gifts made her. I want to give her a big hug! Thank goodness things are going better for her. I hope they can figure out what is causing the fevers. You guys are amazing! I know you have to be so stressed, but you keep your humor (I loved one of your previous entries where you said if Alicia asked you to, you would kill a chicken and all that to get her some chicken nuggets! haha!). And that is awesome that she took a pill! Anyway, hang in there and keep getting better Alicia. Can't wait to hear how things go once the momma gets there;-)

Love,
the Clifton's

Anonymous said...

Alicia, you are so cute I just want to squeeze you!

Hugs!

Anonymous said...

Oh girls,

Tomorrow is going to be full of hugs and lovin'! Between Erika and Kayla, you ladies are in for a treat. Enjoy and we'll keep praying for you.
Love, the Fiaschettis
Mary Ann, David, Joey & Peter

Anonymous said...

This verse has gotten me through some very rough times. Praying that it touches your heart as well.
Psalms 50:15 And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me.
Prayer Bears

Charisse said...

It is wonderful that Alicia took the pill! Great! I love the photos. It is good to see her smiling!
Love you all,
Charisse

Anonymous said...

Hymns have been going through my head all day for some reason. This one is long so I'm only doing the first half but oh it's special. Continuing to pray so very hard!

1. Abide with me! Fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me!

2. Swift to its close ebbs out life's little day;
Earth's joys grow dim, its glories pass away;
Change and decay in all around I see.
O Thou, who changest not, abide with me!

3. Not a brief glance I beg, a passing word,
But as Thou dwell'st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.

4. Come not in terror, as the King of kings,
But kind and good, with healing in Thy wings;
Tears for all woes, a heart for every plea.
Come, Friend of sinners, thus abide with me.

Prayer Bears

Anonymous said...

hey guys.. i just wanted to send my love and to let you know that i have you in my prayers every single night!! I love you and miss you..Uncle Crystal