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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.



Monday, July 7, 2008

DAY +18

I AM FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ALICIA GOT TO LEAVE HER ROOM YESTERDAY AND SHE WAS SOOOOOOOOOOO HAPPY. THE HARD PART WAS GETTING HER BACK IN HER ROOM, SHE PASSED HER OWN DOOR THREE TIMES BEFORE HE FINALLY GOT TIRED AND WENT BACK IN WITHOUT AN ARGUEMENT. THIS FIRST PICTURE IS OF HER RIGHT OUT SIDE THE ROOM SHE HAS BEEN IN FOR THE LAST MONTH...............................















AND THIS PICTURE IS OF ALICIA AND DR. MEHTA, SHE IS ONE OF ALICIA'S FAVORITE DOCTORS AND NOW I KNOW WHY BECAUSE SHE IS THE ONE WHO SET HER FREE.........















SHE DID VERY WELL WALKING THAT FAR FOR THE FIRST TIME. IT WAS HARD TO KEEP UPO WITH HER. IT WAS LIKE A LEASH ON A PUPPY. EVERY TIME SHE GOT TO FAR AHEAD THE LEASH WOULD TUG A LITTLE AND SHE WOULD SLOW DOWN OR TURNA ROUND AND TELL ME TO HURRY UP.

MOMMY WOULD BE SO PROUD OF HER. SHE CALLED ERIKA LAST NIGHT AND KEPT SAYING "I GO OUTSIDE, I GO OUTSIDE" WHEN YOU GET HER SOON ERIKA SHE PROBABLY WILL BE ABLE TO OUT RUN YOU!!!!!!!!!!!!!!!!

ALICIA DIDN'T LEAVE THE BMT WARD, BUT SHE DID WALK EVERY INCH OF THE NORTH SIDE, WHICH IS LIKE A BIG HORSESHOE SHAPE. WHEN SHE LEFT HER ROOM WE JUST LET HER KIND OF LEAD US AND WHAT I FIND KINDA WEIRD WAS SHE LED US STRAIGHT TO ISMAEL'S ROOM. HE IS CLEAR ON THE OTHER SIDE OF THE HORSESHOE . FOR ANY THAT DOES NOT KNOW, ISMAEL IS AN 11 YR OLD BOY THAT ALSO HAS FA, AS DOES HIS 7 YR OLD SISTER, LESLIE. ALICIA AND ISMAEL HAD NEVER MET UNTIL YESTERDAY. I JUST FOUND THAT A LITTLE STRANGE, THIS IS A PICTURE OF ALICIA STANDING OUTSIDE ISMAEL'S DOOR TALKING TO HIM THROUGH THE GLASS WHILE HE IS STANDING AT THE DOOR......................















AND THIS IS ALICIA ON HER WAY BACK TO HER ROOM..........................



















NOW I HAVE SOMETHING TO BRIBE HER WITH. ALL I HAVE TO SAY IS "IF YOU ARE A GOOD GIRL THEN YOU CAN GO OUTSIDE LATER" AND SHE TURNS INTO A LITTLE PRINCESS. (BUT IT DOES NOT LAST LONG)


TODAY HER ANC IS EVEN HIGHER, IT IS AT .85, HER WBC IS AT 1.3, PLATELETS ARE LOW AT 22,000 WHICH I AM SURE SHE WILL BE GETTING TODAY AND HER HBG IS AT 11.5.


THIS IS GOING TO BE A LONG WEEK, NE NE AND CASSIE ARE COMING A WEEK FROM THURSDAY FOR THE WEEKEND SO THE WAITING WILL BE HARD. CASSIE IS ONE OF ALICIA'S FAVORITE COUSIN ALONG WITH KRISTIAN WHICH IS MY OLDEST SISTERS DAUGHTER AND JADE WHICH IS MY YOUGEST SISTERS DAUGHTER.


THEN ERIKA WILL BE HER ON THE 1ST!!!!!!!!!!!!!!!!! I DO NOT KNOW WHO IS MORE EXCITED ME OR ALICIA? I MISS ERIKA AND THE BOYS SO MUCH.


THAN THE FOLLOWING WEEKEND AFTER ERIKA LEAVES, MY OLDEST SISTER, KELLI WILL BE HERE WITH HER KIDS. SO WE HAVE ALOT TO LOOK FORWARD TO ON THE WEEKENDS TO COME.


THANK YOU EVERYONE FOR ALL THE PRAYERS THAT ARE BEING SAID FOR ALICIA THE LORD HAS HEARD THEM ALL AND IS AANSWERING THEM. GOD IS GREAT!!!!!!!!!!

5 comments:

Anonymous said...

Oh happy day!! It is fantastic that Alicia "made the break" and was able to leave the room and get out for a walk. The pictures are great. She is a strong girl!! Love, Dianne

Unknown said...

Hey baby its mommy. I miss you so much. Its exciting to know that everyone is coming I know Alicia is happy.Im glad you got to see fireworks and even leave the room. So go ahead and let her walk as much as she can. I hope its alot. Your doing a great job alicia keep up the good work. Im coming to see you guys soon. Anshon and the boys says Hi and they Love and miss you both. I love you and have a great day and Ill talk to you guys later. Bye

Charisse said...

This is wonderful. Alicia looks sos happy! what more can I say???? CONGRATULATIONS!!!!!
Love Charisse

Anonymous said...

Wonderful news! Look at her go!
Know that I'm continuing to pray!

2 Corinthians 1:3-5 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.

Anonymous said...

Alicia,
There will be up days and down days. But at 100 days I know you'll be celebrating because the good Lord willing you will be heading home. With a great Mee-ma like you've got, every day is special!
Hugs and prayers,
Mary Ann Fiaschetti