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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 14, 2008

DAY +25

WELL IT IS MONDAY AND WE ARE NOT LEAVING TODAY :( I KNOW I SAID YESTERDAY IT WOULD PROBABLY BE TUESDAY BUT NOW IT LOOKS LIKE IT WILL BE MORE LIKE WEDNESDAY OR THURSDAY.) ALICIA CAN NOT DECIDE IF SHE WANTS TO GET A FEVER OR NOT. THIS MORNING IT WENT UP TO 100.5 BUT THEN IT CAME RIGHT DOWN AND THEN IT WENT UP AND DOWN AGAIN. RIGHT NOW AT THIS MOMENT IT IS DOWN SO I AM PRAYING IT STAYS DOWN. THEY DID DRAW MORE BLOOD FOR CULTURES AGAIN, I SOOOOO HOPE IT IS NOT FROM BACTERIA OR A VIRUS. IT SEEMS TO ONLY DO THIS IN THE MORNING TIME, AS HER BLOOD SUGAR LEVEL ALWAYS IS LOW IN THE MORNING. AFTER SHE EATS AND GETS MOTIVATED SHE SEEMS TO DO FINE. SHE DID HAVE ONE FEVER LAST NIGHT BUT IT DID NOT LAST LONG AND HER BLOOD SUGAR WENT VERY HIGH TO WHERE SHE HAD TO HAVE INSULIN BUT THE REST OF THE NIGHT SHE DID FINE.
ALL OF HER COUNTS CAME IN THIS MORNING ACCEPT HER ANC. THEY DREW HER BLOOD KINDA LATE THIS MORNING SO THEY COULD DO THE 24 HOUR TEST FROM REMOVING HER FROM THE ANTIBIOTIC (WHICH COULD ALSO BE WHY HER TEMP IS TRYING TO FOOL US) HER WBC WENT UP TO 2.5 AND HBG STAYED AT 10.4. AND HER PLATELETS WENT UP TO 201,000 FROM THE TRANSFUSION YESTERDAY MORNING. I WILL UPDATE ON HER ANC WHEN I GET IT.
GOOD NEWS THIOUGH, ALICIA FINALLY GOT TO RIDE THE BIKE LIKE SHE HAS BEEN WANTING TO DO ALL WEEKEND. I FINALLY SEEN IT UNOCCUPIED AND BROUGHT IT BACK AND WIPED IT DOWN VERY WELL. SHE WAS SO HAPPY TO SEE IT. SHE RODE SO FAST THAT I COULD NOT KEEP UP WITH HER. (THANK GOODNESS SHE GOT PLATELETS YESTERDAY) HERE IS THE PICTURES I HAVE BEEN PROMISING FOREVER...................

SHE HAD SO MUCH FUN. I HOPE I CAN FIND IT AGAIN SO SHE CAN RIDE IT AGAIN. SHE HAS THIS EXACT SAME BIG WHEEL AT HOME. I WISH I HAD IT HERE SO SHE COULD RIDE WHEN EVER SHE WANTED TO. THAT WOULD BE SO COOL.

ON TO ANOTHER LONG DAY IN OUR WONDERFUL ROOM HERE AT THE HOSPITAL. DENISE WILL BE HERE THIS WEEKEND WITH CASSIE SO WE ARE GETTING EXCITED AGAIN. AND ERIKA WILL BE HERE IN TWO WEEKS. WE CAN NOT WAIT TO SEE HER!!!!!!!!!!!!!!!!!!! THEN MY OLDEST SISTER WILL BE HERE. I AM SO GLAD I HAVE SUCH A WONDERFUL FAMILY!!!!!!!

5 comments:

Anonymous said...

I am so sorry you were not able to leave the hospital today. But the important thing is to find out why she is having the fevers. I am praying for you both and you are always in my thoughts.
Alicis, Sarah said to say HI! and wants to know if she can call you soon? When you are feeling up to it of coarse.
Michel, you hang in there you are doing a wonderful job. I will call either today or tomorrow.

God Bless,
Lori and Sarah
www.caringbridge.org/visit/sarahp

Anonymous said...

I LOVE the photos of Alica riding the bike!! Dianne

Charisse said...

Sorry to hear that a fever has been threatening. We will pray that it doesn't take hold and all will be well for you to leave. We love ya all heaps.
Love Charisse

Anonymous said...

Sorry you're still stuck! Lookin' good on the bike!
May the Lord give you the peace that only He can give. Praying so right now!
John 16:33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.

Anonymous said...

this is greatgrandma. I love you.