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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, August 30, 2006

August 2006 Guestbook Entries

Congrads on another grandbaby coming...I will be keeping you in my thoughts and prayers ..Praying you find the perfect dctr for ALicia..Prayers and Bearhugs Love, Marci The Prayer Bears
http://www.freewebs.com/prayerbears
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Marci Connell
Valdosta, GA USA - Wednesday, August 9, 2006 6:32 PM CDT


Happy New Grandma! Umm....congratulations about another grandchild on the way!
I will be praying that your trip to Cinny will go well and that Alicia will not be overly distressed.
I love you guys,
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, August 8, 2006 8:08 AM CDT

Hi Alicia,
This is Nicole Fauver!!!I am happy that you are doing good!!!Have a great time!!!!!!
Love ya,
Nicole

Nicole Fauver
Arlington, WA USA - Monday, August 7, 2006 3:58 PM CDT

just stopping in to say Hi and hope that everything goes well with your trip to Ohio. We missed camp this year too...But we will be there next year too!!! (that is if everything with Amelia continues to go good)We are going to Minneapolis this week for her to have a bone marrow biopsy and see Dr. Wagner. I pray that she does fine!!! Well give Alicia a big hug from us and tell her that Amelia said HELLO!!!!
Blessings,
Kelly Bennett

~Marshall and Amelia~
Covington, Louisiana - Sunday, August 6, 2006 8:15 PM CDT

Tuesday, August 22, 2006

August 22, 2006

Hello,

Well we are getting ready for our trip to Cincinnati. We leave this Friday the 25th. I'm not looking forward to everything Alicia is getting ready to go through but I know the Lord has Alicia in his palm and will take good care of her.

She is having her Biopsy done on Thursday so keep her in your prayers that day. I will let everyone know how it turn out when we return.

I still haven't had any luck with deciding on a new Pediatrician for Alicia. I plan on making that my top priority when we get back.

Poor Erika is throwing up at least 3 times a day. Hopefully she will get through this part of her pregnacy soon. We are so hoping that she has a boy. I know little Alicia is going to be sooo jealous no matter what it is. I know she will be a wonderful big sister.

If anyone knows of any fun places to take Alicia in Cincinnati while we are there let me know. Thanks Krisstina for you ideas, we have already talked to guest services at Cincinnati Childrens to get passes to a couple of places.

I am so sad to hear that another child has lost her battle with this ugly disease. That is the scariest thing in the world.

Good luck to Michelle P this next week also she is going through surgery, everyone keep her in your prayers also.

Thanks again to everyone for all the support you have given me and my family. We couldn't do it without you.


Grandma Michelle

Monday, July 31, 2006

July 2006 Guestbook Entries

hey guys....its auntie sue....just want to add my lil comments...u know how special you guys are to me and how much i love our baby girl....it is so great to see her everyday and see how much she is learning and growing up to be such a big girl.....you know that i am always here for you guys whatever i can do.....hey guys....its auntie sue....just want to add my lil comments...u know how special you guys are to me and how much i love our baby girl....it is so great to see her everyday and see how much she is learning and growing up to be such a big girl.....you know that i am always here for you guys whatever i can do.....
sue hardyway
wichita, ks us - Thursday, July 27, 2006 10:12 PM CDT


It's good to hear how things are going. Glad that things are going about the same with Alicia. I can totally relate to how you feel about little Alicia and trying to stay strong for them but feel like you are about to break inside. It's so hard to watch them go through everything...and to know we're still only at the beginning of it all. They are such special little children (and adults). We hope that the new baby on the way is a bone marrow match for Alicia. What a blessing that would be! Take care and hope all is well with you and your family.


Teresa - www.caringbridge.com/visit/emmarose
Anna, TX USA - Thursday, July 27, 2006 9:44 PM CDT

Hello Michelle and Alicia,
Good luck in Cincinnati, you will be in good hands there. Say hello to Dr. Harris for Johanna and me. Take care....

www.caringbridge.org/fl/joanbender

Joan
Kissimmee, fl usa - Thursday, July 27, 2006 4:16 PM CDT

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PAM STURGILL www.freewebs.com/prayerbears
- Wednesday, July 26, 2006 5:33 PM CDT

Hi Alicia,
My name is Nicole and i got diagnoised with Aplastic Anemia recently!I am almost 18 years old on August 20th!I had health problems since i was 8 years old!I read your journal and it seems like you are doing well!I am here for new friends and support!My platelets are 61,000 and they go up to 75,000 and thats the higher it goes!I am having problems with my red blood cells dropping!I will talk to you later!I wanna stop by to tell you and your family that you are in my thoughts and prayers!Hangon in there and you will get through it!
Take care,

Nicole Fauver
Arlington, WA USA - Friday, July 21, 2006 2:35 PM CDT

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The Prayer Bears


Belle
Columbus, OH - Saturday, July 15, 2006 9:27 PM CDT

Thinking of you Michelle and Alicia...we love you.
Love Charisse and Alan
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Wednesday, July 12, 2006 8:30 AM CDT

Photobucket - Video and Image HostingAlicia, Thinking about you today and I wanted you to know you are in my thoughts and prayers,,.Prayers and Bearhugs Love, Marci The Prayer Bears
Marci Connell
Valdosta, GA USA - Monday, July 10, 2006 3:35 PM CDT

Wednesday, July 26, 2006

July 26, 2006

SORRY IT HAS BEEN SO LONG SINCE I UPDATED EVERYONE ON ALICIA.

SHE IS STILL DOING ABOUT THE SAME. WE FINALLY GOT OVER THE PROBLEMS WITH POTTY TRAINING. I AM SOOOO HAPPY!!!!! SHE IS DOING SUCH A GOOD JOB, SHE STILL HAS A COUPLE OF ACCIDENTS HERE AND THERE BUT OVER ALL SHE IS DOING GREAT.

WE ARE GETTING READY FOR OUR TRIP TO CINCINNATTI CHILDRENS. WE ARE LEAVING ON AUGUST 25TH. I AM SO REGRETTING GOING, I HATE TO SEE ALICIA GO THROUGH ALL OF THIS. I WILL KEEP STRONG THOUGH FOR HER, SOMETIMES IT GETS SO STRESSFUL, I BREAK DOWN AND CRY WHEN NO ONE IS AROUND. BUT I KEEP MY FAITH IN GOD AND I KNOW HE WILL GET ME THROUGH IT. IT JUST HURTS SO MUCH TO SEE LITTLE ALICIA GOING THROUGH ALL THE PAIN.

WE DO HAVE SOME GOOD NEWS THOUGH... IM GOING TO BE A GRANDMA AGAIN. ERIKA IS ABOUT 2 MONTHS PREGNANT. WE JUST FOUND OUT LAST WEEK. IM HOPING FOR A BOY, I NEED A GRANDSON ALSO.

WE ARE PRAYING THAT HER BABY WILL BE HEALTHY. ALICIA HAS A DIFFERENT FATHER THAN THIS BABY HAS, ERIKA IS ENGAGED TO A WONDERFUL GUY, I KNOW HE WILL BE AN AWESOME DADDY. WE HAVE SENT SWABS TO NEW YORK TO SEE IF HE CARRIES THE FA GENE, BUT THE ODDS ARE REAL HIGH THAT HE WON'T. SO PLEASE EVERYONE KEEP HER IN YOUR PRAYERS.

I SO HATE THAT I HAD TO MISS CAMP THIS YEAR. I HOPE EVERYONE HAD FUN!! I WILL BE THERE NEXT YEAR THOUGH, I CAN'T WAIT TO SEE EVERYONE AGAIN.

OH YEAH WE HAD ANOTHER DOWN FALL, ALICIAS PEDIATRICIAN SHE HAS HAD SINCE BIRTH HAS DECUDED TO STAY AT HOME AND BE A FULL TIME MOMMY SO WE ARE WITH OUT A DOCTOR FOR ALICIA AT THIS TIME. I AM LOOKING INTO SOME OPTIONS I HAVE BUT IT IS SO HARD FOR ME TO TRUST JUST ANY DOCTOR WITH ALICIA. HOPEFULLY I WILL FIND ONE I TRUST.

I GUESS THATS ALL FOR NOW. I WILL UPDATE LATER

GRANDMA MICHELLE

Tuesday, June 27, 2006

June 2006 Guestbook Entries

Hi Alicia,
I hope you are well. Love Nicole xxx
www.c-h-o-c.org.uk

Nicole
Kent, England - Monday, June 19, 2006 11:21 AM CDT