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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, January 24, 2008

January 24, 2008

Sorry it been almost two months since I have Updated on how Alicia is doing. The Holidays have been very hectic around here.

We go back to Cincinnati the first of March for another Biopsy, and again every three months until transplant. Dr. Davies wants all of the Biopsy's done there and not in Kansas no more. She also has to have Cbc's every month now, she had one done last week and all of her counts stayed about the same, her Wbc and Rbc dropped slightly but not enough to worry Dr. Davies. Her Platelet count is what is worrying everyone, it was at 19,000 last week down from 21,000 the last time.

She is very tired alot lately, anyone that has met Alicia knows how very very very hyper and active she is, now she is laying down alot without even being told to. That has me very concerned.

Alicia's baby brother is getting so big, I put an updated picture in her album for everyone to see. Alicia is very protected of him. She always tells everyone "no touching, he's my baby Anshon" they are so cute together. I wonder how she will react with her new baby brother. YES ITS A BOY. We found out last week that Erika is having another boy, this is the last one, she is getting her tubes tied after this on (thank go), I already told Erika not to even try to bring me all of them at once. Boy is she going to have her hands full!!!

I will update again sooner than two months,I promise. I finally got a computer at home so I have no excuse now.

Mee-ma Michelle

Monday, December 31, 2007

December 2007 Guestbook Entries





Love and prayers,

Eva and Rodney
www.caringbridge.org/mi/rodneyreeves, - Sunday, December 23, 2007 7:40 AM CST

Hello Michelle,
I was wondering whether you have the results of the chromosome study from Alicia's last biopsy? I have been thinking about you lots!
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, December 15, 2007 7:35 PM CST

Monday, December 3, 2007

December 3, 2007

WE MADE IT BACK TO CINCINNATI ON SATURDAY. EVERYTHING WENT WELL.

HER PLATELET COUNT CAME UP FROM 19,000 TO 21,000. DR DAVIES SAID HER MARROW LOOKED OK BUT WE ARE STILL WAITING IN THE RESULTS FROM THE FISH STUDY.

DR DAVIES WANTS HER TO HAVE BIOPSY'S STILL EVERY THREE MONTHS BUT SHE WANTS THEM DONE IN CINCINNATI AND NO MORE IN KANSAS.

SHE ALSO WANTS CBC'S EVERY MONTH NOW INSTEAD OF EVERY THREE MONTHS, SHE ALSO TOLD ME THAT TRANSPLANT LOOKS TO BE SOON.

SHE WAS SUCH A LITLLE TERRIOR THERE, (THANKS TINA AND KEITH FOR PUTTING UP WITH US) ALICIA HAS SO MUCH ENERGY, SHE WORE JO AND JACY OUT!!!!!!

I WILL UPDATE MORE AFTER WE GET THE REST OF THE RESULTS. THANK YOU SO MUCH FOR CHECKING ON HER.

MICHELLE

Friday, November 30, 2007

November 2007 Guestbook Entries

Hello Michelle and Alicia,
how did the biopsy go....been thinking about you. Love you heaps,
Charisse

Charisse Howard-Jones/The Prayer bears
Adelaide, SA Australia - Wednesday, November 21, 2007 6:48 AM CST


Alicia, I hope your trip is short and nothing to worry about. Haylee, Jesse and I are also leaving for Cincinnati on the 28th, but we will be staying for a long time. I hope you are feeling well.
Happy Birthday Pretty Girl!!!
Love You,
Candace

Candace Milroy
Liberty, Kentucky USA - Sunday, November 18, 2007 3:38 PM CST

Stopping by to wish Alicia a happy birthday and let you know the family is in my prayers about the bone marrow testing.
Jennifer, a Texas prayer bear
Bridgeport, Texas - Friday, November 16, 2007 7:44 PM CST

Happy Birthday, Alicia!!!! We wish we could've gone to your party! Emma misses you. You two are so cute together! Hope your biopsy goes well. Give your grandma a hug for me:-)

Love,
The Clifton's

http://cliftonclan.blogspot.com
TX USA - Friday, November 16, 2007 7:32 PM CST

!

HAPPY BIRTHDAY
Happy Birthday!!

"If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to hope? We have two options, medically and emotionally: give up, or fight like hell".
-Lance Armstrong


I will praise the name of God with song; I will magnify him with thanksgiving. Psalm 69:30
Praying for a Blessed Thanksgiving for you & yours,
Barb, John, Shawn,
Shannon, & Colleen
www.caringbridge.org/page/shannon
Life is fragile. . .
Handle with prayer.

The Prayer Bears

Barb
- Friday, November 16, 2007 3:04 PM CST

Alicia,
Good luck in Cincy! I know it's no fun getting poked all the time but you are such a trooper. Take care and try to mix some fun in with the medical stuff.

Take care,

John Hanna
Fort Gibson, OK USA - Friday, November 16, 2007 2:49 PM CST

Hello Alica . Found your page from another caringbridge page. How neat that we share the same last name .

www.caringbridge.org/visit/margaretreed1

Tracy
Corry, PA - Saturday, November 10, 2007 6:01 PM CST

Alicia,
Haylee and I wanted to send you a quick note to let you know that we are thinking of you. We hope your next biopsy shows even more good news than the last. We are heading to transplant, but we will try to keep up with you. Haylee sends you great big hugs and kisses.
Love Ya Cutie,
Candace Milroy

Candace Milroy
Liberty, KY USA - Friday, November 9, 2007 9:17 PM CST

Friday, November 16, 2007

November 16, 2007

WOW IT IS SO HARD TO BELIEVE THAT ALICIA WILL BE 5 IN TWO DAYS!!!!!!! SHE IS GETTING SO BIG (NOT REALLY).

WE HAD A BIRTHDAY PARTY FOR HER LAST WEEKEND AND SHE HAD SO MUCH FUN. I NEVER KNEW HOW MUCH DORA THINGS ONE PERSON COULD HAVE, BUT I THINK ALICIA HAS EVERY DORA ITEM AVAILABLE.

WE LEAVE FOR CINCINNATI ON THE 28TH. ALICIA IS GOING TO HAVE ANOTHE BIOPSY, AND THIS ONE WORRIES ME (SO DID ALL THE REST) BUT AS WE KNOW THE LAST ONE SHE HAD DONE IN CINCINNATI WAAS THE ONE WHICH SHOWED THE ABNORMAL CHROMOZONE, WISH US LUCK ON THE RESULTS.

HER LAST CBC WHICH WAS DONE TWO WEEKS AGO SHOWED HER PLATELETS HAD DROPPED TO 18,000 SO THAT HAS ME WORRIED ALSO.

WE HAVE A PROGRAM HERE IN KANSAS WHICH IS CALLED SHARE THE SEASON, THEY DO AN ARTICAL ON A FAMILY EVERY SUNDAY IN THE PAPER AND LOCAL NEWS, AND ALICIA WAS CHOSEN TO DO THE LEAD STORY TO START OFF THE SEASON. I THINK THAT WOULD BE REAL NEAT.

HOPE EVERY ONE IS WELL AND CANDACE YOU, HALLEY AND JESSE ARE IN MY PRAYERS, WE WILL SEE YOU SOON.

JO AND JACY... I CAN'T WAIT TO SEE YOU WE WILL BE THERE SOON.

MICHELLE