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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.



Tuesday, February 26, 2008

February 26, 2008

Hello everyone,

Alicia is doing fine at this time. We have not had another cbc done since the last one in January, she will have one done next week when we are in Cincinnati. Hopefully her counts have came up. Her Platelets still have me and Dr. Davies very worried.

We will be in Cincinnati on the 6th for an appointment with Dr. Davies and a Biopsy done the following morning on the 7th. I pray this one will have good enough results so that Alicia will not have to keep having Biopsy's done every three months and maybe have them done in six months instead. She has had them done every three months for so long now and that is getting hard on her, and myself. I feel so sad every time she has to have one. I will update as soon as I get the results.

We have scheduled her make-a-wish for the middle of July. She is goning to Disney, we look up Mickey Mouse every night on the computer. Alicia is soooo excited. We wanted to wait until Alicia's baby brother is born so it wouldn't be so hard on Erika, she is so huge and wouldn't last an hour walking through Disney world. The baby is due in May, and depending on Alicia's Biopsy's results we might have to have another in three months which will be in June so that is why we decided on July. Make-a-wish came out to the house last week so everything is being planned now.

Alicia's baby brother, Anshon Jay is getting so big. He turns one in a couple of weeks, he started walking last week, I guess he is moving out of the way for the new baby (and last baby!!!). Erika and Big Anshon decided on a name finally, it is going to be Jay Shon. Oppisite of Anshon Jay. (kinda cute huh)

I hope everyone is doing well. We can not wait til camp this year so we can see everyone!!!

I will update as soon as we get results from the Biopsy next week.

Mee-ma Michelle

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