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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, April 30, 2007

April 2007 Guestbook Entries

Alicia..
I hope you are doing well and having lots of fun with your new baby brother!!
We think of you often, just haven't posted much!

Love and prayers,

Eva and Rodney~The Prayer Bears~
www.caringbridge.org/mi/rodneyreeves, - Sunday, April 29, 2007 1:10 PM CDT


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Happy Easter

Krisstina, Keith, Jo, Jacy, & Cameron
- Sunday, April 8, 2007 11:29 AM CDT

Praying that Alicia adjusts to the new baby soon.
Jennifer from the prayer bears
Bridgeport, Texas - Wednesday, April 4, 2007 3:43 PM CDT

Alicia...
How's it going, being the big sister?? You know, baby Ashon is going to look up to you for assistance as he grows.

My son was extrememly jealous when my daughter was born. They are 4-1/2 years apart. So what we did, was buy him a baby doll. Just a plain, simple one. So when we bathed our baby, he did the same. We fed her, he fed his, etc...and when we took her for walks in her stroller..he purchased him one of those cheap lil $5 toy strollers, and he could walk his baby with us. It made a world of difference and the jealousy didn't last long at all. Also, before bedtime every night, our son got some extra story and attention time, "big brother time" we called it!
It's a huge adjustment, but one that Alicia will overcome in no time!!

Wishing you all a great week!

Love and hugs,

Eva and Rodney~The Prayer Bears~
www.caringbridge.org/mi/rodneyreeves, - Tuesday, April 3, 2007 6:54 AM CDT

Ha! I suppose it would be weird having a baby boy in the house...since you are used to girls....hehe...and I am the opposite...I am used to the boys and if I have a baby girl next...I suppose I will be saying that having a girl is weird! Ha! I just wanted to stop by and thank you for all the support that you have been giving me and i have been thinking about you and your family tonight.
I love you,
Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Sunday, April 1, 2007 8:17 AM CDT

Saturday, March 31, 2007

March 2007 Guestbook Entries

Hi Alicia and Family,
My name is Jenna and I came across Alicia's site. Alicia is an inspiration and a fighter. Alicia is in my thoughts and prayers.
www.caringbridge.org/canada/jenna

Jenna
Kamloops, BC Canada - Thursday, March 29, 2007 0:10 AM CDT


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Awwwwwwwwwww! Congrats!
Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Monday, March 19, 2007 12:33 AM CDT

CONGRATULATIONS!
May God grant you always
A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel
So nothing can harm you.
Old Irish Blessing
The Prayer Bears


Praying for you,
Barb, John, Shawn,
Shannon, & Colleen
www.caringbridge.org/page/shannon

Prayer Bear Barb
- Friday, March 16, 2007 10:10 AM CDT

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Congratulations on your new baby boy!!!

Jan C. ~A Prayer Bear ~ www.freewebs.com/prayerbear
- Friday, March 16, 2007 10:06 AM CDT

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Wishing you all the best!!

Alicia...you are now the big sister!! How cool is that!! Big sisters are a lot of fun! Your new baby brother is going to grow up, looking up to you...coming to you for advice and probably being a little pain in the backside, but you will love him, no matter what!!
Always remember...
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Love and bearhugs to you all...

Eva and Rodney~The Prayer Bears~
www.caringbridge.org/mi/rodneyreeves, - Friday, March 16, 2007 5:06 AM CDT

May God grant you always
A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel
So nothing can harm you.
Old Irish Blessing

Praying for you,
Barb, John, Shawn,
Shannon, & Colleen
www.caringbridge.org/page/shannon
The Prayer Bears

Prayer Bear Barb
- Thursday, March 15, 2007 4:59 PM CDT

Hey Alicia,
I am so happy about your results. Praise the Lord for the decrease in blast count to 2%. Praise Him for the vanishing of monosomy 7. God is good. You keep being stong sweetie.
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, March 10, 2007 7:14 AM CST

HEY SWEETIE THIS IS YOUR MOTHER I JUST WANTED YOU TO KNOW I LOVE YOU ALOT.I KNOW EVERYTHING IS GOING GOOD WITH YOU RIGHT KNOW AND YOUR A VERY STRONG BABY. I LOVE YOU.
YOUR MOTHER
WICHITA, KS - Tuesday, March 6, 2007 10:38 PM CST

Thursday, March 1, 2007

Marcy 2007 entries

Thursday, March 22, 2007 11:24 AM CDT

Hello everyone,

Lil Anshon is one week old today. He is doing so well. Erika is taking him to the doctor this afternoon for his one week check up. He is such a good little baby, Im at Erikas now watching him while she goes to the doctor to get her staples removed.

I was right about Alicia being jelous. She has been staying with me since Lil Anshon was born, Erika is still moving very slow and Alicia is such a little busy body. We were over Erika's Sunday and the very first time I picked up lil Anshon Alicia wasn't having it. She jumped up right in my lap and wouldn't get down so I had to put the baby down. We are going to have to work on sharing Mee-ma. She also tried to jump off the porch and Erika had to catch her, Erika said that felt like she was ripping open inside. Hopefully by next week Erika will be feeling better so Alicia can go home. She starts back to school Monday, so I think we will spend Sunday again so Alicia can get used to being around the baby and being careful with Erika.

We finally found a Pediatician here that we like, she has a lot of special need children as patients and she is very eager to learn all she can about FA. That made me feel at ease finally.

I will update later, the baby is stirring so I think he might need a dry diaper, ( its so weird having a little boy)

I hope all is well with everyone.

Michelle


Thursday, March 15, 2007 6:43 PM CDT

HELLO EVERYONE,

I BECAME ANOTHER MEE-MA TODAY. ALICIAS LITTLE BROTHER WAS BORN THIS MORNING AT 8:30 AM. ERIKA DID JUST FINE DURING HER C-SECTION. "LIL ANSHON" IS SOOOOOO CUTE. HE WEIGHED 7 LBS 15 OZ.

OF COURSE THE FIRST THING I DID WAS COUNT HIS FINGERS AND THEY WERE ALL THERE. HE DOESN'T SHOW ANY SIGNS OF FA THAT I COULD SEE, ALTHOUGH IM NOT GETTING ANY HIGH HOPES UNTIL HIS RESULTS COME BACK.

THE TEST IS THIS EVENING. MY SISTER IS TAKING ALICIA TO THE HOSPITAL TO SEE HIM. I KNOW SHE IS GOING TO BE SO JELOUS.

MY FRIEND IS GOING TO PUT PICTURES OF HIM ON ALICIAS SIGHT THIS EVENING SO HOPEFULLY EVERYONE CAN SEE HOW CUTE HE IS. ( YES IM A PROUD GRANDMA)


MICHELLE


Sunday, March 11, 2007 6:26 PM CDT

Hello.

well we are in the waiting stages again. alicia is going to have another biopsy done in 2 months, hopefully they stay the same as last which said her monosomy 7 had dropped low enough for it to be counted and her blast count was down to 2%. i know that the monosomy can come right back so im not going to get my hopes up about it staying away because i have not had very good luck lately on having high hopes.


alicia and me did a live interview for childrens miracle network yesterday. i was kinda scared but alicia was herself and took everyones attention. i wish i had all her energy.


the count down is on... im going to be another mee-ma in 4 days. i am sooo excited. the first thing im doing is counting for 5 fingers. i just know he is going to be so cute. erika is having a c-section at 8:30 on thursday the 15th.


ill put pictures on alicias site just as soon as i get them.

michelle

Wednesday, February 28, 2007

February 2007 Guestbook Entries



Praying for you,
Barb, John, Shawn,
Shannon, & Colleen
www.caringbridge.org/page/shannon




Prayer Bear Barb
- Thursday, February 22, 2007 3:15 PM CST


Praying for you,
Barb, John, Shawn,
Shannon, & Colleen
www.caringbridge.org/page/shannon




Prayer Bear Barb
- Thursday, February 22, 2007 12:53 AM CST

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Love and bear hugs,

Eva and Rodney
www.caringbridge.org/mi/rodneyreeves, - Tuesday, February 13, 2007 6:01 AM CST

Alicia,
Just thought we'd stop by to say hello and to let you know that we're thinking of you and praying for you!

Love and hugs,

Eva and Rodney~The Prayer Bears~
www.caringbridge.org/mi/rodneyreeves, - Monday, February 12, 2007 6:44 AM CST

Just wanted to let you know I am thinking about you as you get Alicia's results and so on!
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, February 10, 2007 6:19 PM CST

Thursday, February 1, 2007

February 2007 entries

Thursday, February 22, 2007 10:38 AM CST

Hello,


Sorry I haven't updated on Alicia in a while. I still have troubles finding a computer to use.

We made it to Cincinnati safe. Our first flight went just as planned, we had a layover in Minnesota, and got to see Dianne and Michelle. That was soooo cool. Dianne fixed us an awesome Breakfeast. Thanks so much Dianne. Alicia was (and still is) very excited and wired. She knows she isn't at home and is testing mee-ma alot. I guess she's just beibg a tipacal 4 yr old.

We got great news, Alicia's biopsy results came back and they were awesome. Her blast count was confirmed at 2% and the abnormal Monosomy seven went away for now. This is all very hard to believe. Just within the past 2 months I went from being told my baby was going to transplant to finding out her counts are fine for now, I truely believe that it was a wake up call. Hopefully I will be able to handle it a little better when the time comes for transplant.

We have a couple of appointments in the morning before the family meeting on Saturday and Sunday. I will let everyone know how they turn out.


Thank you everyone so much for all the prayers you have said for Alicia.


O yea I almost forgot. Erika is having the baby on the 15th of March at 8:30 am. I am so excited to finally get to hold my grandson.


Grandma (X's 2 almost) Michelle


Wednesday, February 7, 2007 2:13 PM CST

Hello everyone,

Sorry I haven't been updating on Alicia but I have had problems getting accsess to a computer.

She is having her follow up Biopsy in the morning. Thursday the 8th. This is the one that determines if she goes to transplant or not, This is going to be a very long weekend.

We are going to Cincinnati at the end of the month for the meeting and they are going to do alot of tests on Alicia, I will keep everyone posted.

Erika is getting huge!!! only one month left til im a grandma again. I am so excited.

Michelle