CLICK HERE FOR THOUSANDS OF FREE BLOGGER TEMPLATES »

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.



Sunday, July 31, 2005

July 2005 Guestbook Entries

Hey~~ My name is Mackenzie and I'm
a member of Rose's prayer group.
Rose is a friend of mine and we
are praying for you. She is going to
teach me how to do the pretty pictures
that she puts on here. Love, Mackenzie
prayer_angels

Mackenzie
Easley, SC USA - Saturday, July 30, 2005 12:52 AM CDT



Image hosted by Photobucket.com
I'm thinking of you all. I start back
to school next week on Aug 4th. I have
started a new prayer group called,
prayer_angels. Its a group of teenagers
like me who want to make a DIFFERENCE in
our world we live in. You are going to be
meeting some very nice kids who really do
believe in prayer and angels. I love you all.
Hugs, Rose
prayer_angels
http://roseygirl7.tripod.com

Rose
SC - Thursday, July 28, 2005 8:19 AM CDT

Hi Alicia and Michelle and Erika,

just want you to know I am thinking about you all. Can't wait to see you at camp in 2 1/2 weeks!!
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, July 26, 2005 8:49 AM CDT

Image hosted by Photobucket.com
Hi Alicia,
I want you to remember that I love you.
You are so special. Hugs, Rose

Rose
SC - Monday, July 25, 2005 8:55 PM CDT

Image hosted by Photobucket.com
Hi Alicia, Michelle, and Erika,
I hope that you are having a good weekend.
I love you and I'm praying for you.
Hugs, Rose

Rose
SC - Sunday, July 24, 2005 6:46 AM CDT

You don't know me, but I wanted you to know that I have added Alicia's name to my son's web page to try and spread the word for her prayer: http://babiesonline.com/babies/b/bubble/
I hope you do not mind. Our prayers are with her and your family.

Julie Leonard
Mocksville, NC USA - Friday, July 22, 2005 6:03 PM CDT

Image hosted by Photobucket.com
The Prayer Bears

Praying things are much better now and we will see you soon at Camp Sunshine!
Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Vad - Wednesday, July 20, 2005 11:52 AM CDT

Image hosted by Photobucket.com
Hi Alicia,
I just want to let you know that you are
in my thoughts today and always in my
prayers. I'm sending you a big hug.
Hugs, Rose

Rose
SC - Wednesday, July 20, 2005 10:12 AM CDT

Image hosted by Photobucket.com
Hi Alicia,
I'm happy that you liked what was inside
your box. I hope that you have a great time
at camp and make many friends and many
memories. I love you all. Hugs, Rose

Rose
SC - Tuesday, July 19, 2005 7:59 AM CDT

Hi Alicia,
I hope you are feeling much
better honey..Sending you a great
big angel hug and lots of love
and prayers.

Trish/Angel_Wings
Kingston, TN USA - Monday, July 18, 2005 12:25 AM CDT

Image hosted by Photobucket.com
Hi Alicica, Michelle and Erika,
I hope you had a nice weekend. I hope
Alicia had lots of fun. I love you.
Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Monday, July 18, 2005 7:28 AM CDT

Image hosted by Photobucket.com
Hi Alicia, Michelle and Erika,
I hope you had a nice weekend and Alicia
had lots of fun. I love you all.
Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Monday, July 18, 2005 7:23 AM CDT


Hi There!!! Wanted to stop
by and send you some angel
hugs and prayers!!! God Bless!!
Prayers and Hugs,
LeAnn

LeAnn Mooneyham/Angel_Wings
Baxley, GA United States - Sunday, July 17, 2005 8:49 PM CDT

So sorry to hear about Alicia's concussion. And, an IV in the foot is no fun. Poor baby. Peter was a difficult stick the first four years and they had to use his foot also. Sending extra hugs and prayers your way.
Mary Ann Fiaschetti (Peter's Mom, 5 y/o FA-A)
West Point, Ny - Sunday, July 17, 2005 4:46 PM CDT

Image hosted by Photobucket.com
Hi Alicia,
Will you just look at that pretty picture
Laurie left for you. I know you were smiling
really big when you saw that. Michelle, I'm
praying for my little friend and I hope she
is doing better since the accident. I love
you all. Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Saturday, July 16, 2005 8:12 AM CDT



I hope you feel better soon. You are in my prayers.

~Laurie, The Prayer Bears~
- Friday, July 15, 2005 11:05 PM CDT

Image hosted by Photobucket.com
Hello Alicia, Erika,Michelle,
I want you to know that I'm thinking
about you all. Love you all very much.
I hope you have a nice day.
Hugs, Rose

Rose
SC - Friday, July 15, 2005 10:08 AM CDT

Hello there Alicia and Michelle,
I am so relieved to hear that you had no bleeding in your head at all!! And what a brave girl you are. Don't worry about being scared at the hospital. I have the same disease as you have....Fanconi Anaemia.....and when I go to then hospital and have blood taken....they have to stick me a lot too!! And I don't like it....I even do a LOT of complaining!! And I am 27 years old!! HAHA. I used to use emla cream when I was little like you. It helped. I am glad that your platelet count came up and I rejoice with you.
You are such a sweetie,
blessings and love,
Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Friday, July 15, 2005 9:31 AM CDT

Image hosted by Photobucket.com
Hi Alicia,
WOW, What a pretty picture Michelle and Bethany
left for you. You got hearts, hugs, and smiles.
I know that put a smile on your pretty face.
Your grandma told me that you love the pretty
pictures everyone leaves for you. I'm praying
for you and I hope you have a nice day.
Hugs, Rose

Rose
SC - Thursday, July 14, 2005 9:24 AM CDT

It's sure no fun getting all those sticks. Glad your counts were up though. I'm glad it's all over with and you are home to rest now. We'll be keeping you in our thoughts and prayers.
Love,
Michelle & Bethany
Image hosted by Photobucket.com
Image hosted by Photobucket.com
Image hosted by Photobucket.com



Michelle & Bethany
Knoxville, TN - Wednesday, July 13, 2005 11:58 PM CDT

I'm glad she is doing better. Poor baby!! I can't believe it took so many sticks! Emma has had difficulties before too, but not that many. It's a very stressful time. In case something like that ever happens again (where she needs medical treatment), they can give her Versed which is a calming drug that makes them less anxious and relaxes them. We have them give it to Emma before her biopsies before they try to put an IV in. If I'm remembering right, it also helps them to not remember. We've only used it times when they are going to be putting her to sleep anyway.

Also, I'm not sure if you know (we didn't know this until last October), you can use Emla cream. It will numb the arm and make pokes less painful for the little one. I know in this case, it wasn't something you could really plan for. Just thought I'd mention it for her regular blood draws. Glad she is doing better. I can imagine you would all be worn out! Great to hear her platelets are going up.

Take care,
Teresa

www.caringbridge.com/or/emmarose
Aloha, OR USA - Wednesday, July 13, 2005 10:17 PM CDT

Image hosted by Photobucket.com
Alicia,
Hi sweetie!! I am sorry to hear that a beautiful little girl was in the Hospital!!! Glad you are ok and your counts are up!!! PTL!!!!!! Keeping you in prayers and thoughts!!!! God Bless!
Prayers and Hugs,
LeAnn

LeAnn Mooneyham/Angel_Wings
Baxley, GA United States - Wednesday, July 13, 2005 5:54 PM CDT

Alicia , I am so sorry you were in Hospital , its good news that your count was up , now you can get some much needed rest , we are thinking of you always and praying for you always
love lots and lots of love
from Sammy Joe s familyImage hosted by Photobucket.com

Maria and Sammy-Joe
Craigieburn , Melbourne , VIC AUSTRALIA - Wednesday, July 13, 2005 4:39 PM CDT

Hi Precious,
I am so sorry that you had to go to
that old hospital again and had to have so many
sticks to get your iv in..Bless your heart.We are
sending you a great big angel hug and lots of hugs,love
and prayers..

Trish/Angel_Wings
Kingston, TN USA - Wednesday, July 13, 2005 3:18 PM CDT

Image hosted by Photobucket.com
Hi Alicia,
I'm thinking about you this morning.
Hoping you have a nice day full of fun.
Give everyone a big hug from me.
Hugs, Rose

Rose
SC - Wednesday, July 13, 2005 7:37 AM CDT

Oh, poor baby girl! What a scary experience. I'm sure with some encouragment and maybe a lollipop Alicia will come to forgive your sister. That was nice that she was the "bad guy" when things got tough. I always make my husband do it if he is there. I'm so glad her platelets are going up and she's okay. See you soon at camp :0)

kristin young
gorham, me usa - Tuesday, July 12, 2005 3:56 PM CDT

Image hosted by Photobucket.com
Hello Alicia,
I'm glad you are allright and at home. I'm
sending you hugs and lots of love.
Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Tuesday, July 12, 2005 8:13 AM CDT

What an ordeal! So, so, SO happy that Alicia is ok.
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Tuesday, July 12, 2005 5:26 AM CDT

Image hosted by Photobucket.com
The Prayer Bears

Praying for Alicia and you all...
Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Monday, July 11, 2005 10:16 AM CDT

Hello Alicia, Michelle and Erika,
I'm so sorry about Alicia's accident.
I read about it this morning when I checked my
email from you. My nanny is in the hospital too.
We had to take her on Friday night. I pray that
Alicia is better and there are no problems. Give
her a hug from me. Love, Rose

Rose
SC - Sunday, July 10, 2005 10:08 AM CDT

Greetings Alicia, Michelle and Erika,
I have been praying for you all, especially for Alicia. I was hoping to see if there was an update on her fall where she landed on her head. I pray that all is going well and that she is still ok. Bless you all and love you.

Love Charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Sunday, July 10, 2005 3:31 AM CDT

I'm praying for your head to be ok, and for you to heal very quickly Alicia sweetie. I'm so sorry this happened to you :( It makes me want to cry!

(((HUGS)))
Image hosted by Photobucket.com
The Prayer Bears

Heidi
NM USA - Friday, July 8, 2005 9:58 PM CDT

Michelle,
I am praying that Alicia will be ok...praying that Jesus will protect her from any bleeding. I am sorry that this happened. I am still praying that her platelet count will go up to a good level. Bless you and love you.

Charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Friday, July 8, 2005 8:38 PM CDT

Praying that Alicia has no bleeding in her head.
Jennifer
Texas - Friday, July 8, 2005 6:59 PM CDT

Hi all
Just drop by to say that you all are very much in my thoughts & prayers.
Sending lots of love hugs & prayers your way.

Pam Sturgill / The Prayer Bears
- Friday, July 8, 2005 5:22 PM CDT

Image hosted by Photobucket.com
Hello My Special Friends,
I'm praying for Alicia's counts and many
of my friends are too. Yesterday I was knitting
with the women at the retirement home. I've talked
about Alicia many times to the women. This morning
the activity director called me and asked me to
tell you they are all praying for Alicia.
As soon as I walk into the room there
someone always asks me, how is
our little Alicia doing. You have many friends
that you don't even know praying for Alicia.
I love you all very much. Hugs, Rose
Rose's Head Huggers of SC
http://roseygirl7.tripod.com

Rose
SC - Friday, July 8, 2005 9:45 AM CDT

Just stopping by to say hello and let you know that I am keeping Alicia in my prayers as well as all of you. Can't wait to see everyone at camp this year. Take care and know that we are thinking of you!!!
HUGS & Blessings,
Kelly
Marshall 12 (22 months MUD BMT, Amelia 5 FA-G, and Nathan 2 Non-FA

*~* Marshall and Amelia's Place*~*
Covington, Louisiana - Thursday, July 7, 2005 8:38 PM CDT

Counts, go back up!! Stop worrying people like this! I hope that her counts rise soon. I'm not even close to an expert when it comes to things like that, but I know it must worry you guys. Please email me if you need to vent at all. You'll be in our thoughts and prayers. Can't wait to meet you guys in person:-) Oh, do you know what Alicia's complementation group is?

See you at camp,
Teresa

www.caringbridge.com/or/emmarose
Aloha, OR USA - Thursday, July 7, 2005 7:07 PM CDT

Image hosted by Photobucket.com
Good Morning Alicia,Michelle and Erika,
I'm glad you had a nice time at the lake and Alicia enjoyed the boat ride. Michelle, are you and your sister identical twins? My boyfriend and his brother are identical twins and sometimes its hard to tell them apart.
I'm very happy you are all in my life and are my friends.
I love you very much. Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Thursday, July 7, 2005 8:20 AM CDT

Image hosted by Photobucket.com
Good Morning Alicia, Michelle, and Erika,
I hope you had a nice time at the lake. I went to a waterpark and had lots of fun. I'm thinking about you all and sending you my love and big hugs. You are in my prayers.
Hugs, Rose
http://roseygirl7.tripod.com

Rose
SC - Wednesday, July 6, 2005 8:12 AM CDT


The Prayer Bears

Love the new photos! Hope you all are having a great day!
Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Tuesday, July 5, 2005 1:19 PM CDT

Wanted to drop by and wish you a happy 4th of July!! See you next month:-)


Teresa (www.caringbridge.com/or/emmarose)
Aloha, OR USA - Sunday, July 3, 2005 9:20 PM CDT

Greetings Alicia and Michelle, and Erika,
you continue to make me smile, Alicia, whenever I look at your photo. I am praying for you sweetheart. Michelle, I am praying for you too and your daughter. You are all in my heart.
Lots of love,
Charisse/ The Prayer Bears

Charisse Howard-Jones
Adelaide, SA Australia - Sunday, July 3, 2005 7:21 AM CDT

Image hosted by Photobucket.com
Alicia,Michelle,and Erika, Its me Rose. I have missed you very much. I have thought about you everyday and I always have you in my prayers. Have fun at camp. I hope you like the new caps I made you for camp. I love you very much.
Love always, Rose
http://roseygirl7.tripod.com

Rose
SC - Saturday, July 2, 2005 8:49 AM CDT

Alicia
This is the frist time i have been to your site but i just drop by to say hi an that your very much in my prayers.
Sending love hugs & prayers your way.

Pam Sturgill / The Prayer Bears
- Friday, July 1, 2005 9:50 PM CDT

Monday, July 11, 2005

July 2005 Entries

Monday, July 11, 2005 2:03 PM CDT

Alicia is doing fine now.

We had a big scare Friday. A man who live in the apartment next to Erika( Alicias mom) He picked her up and dropped her on her head. He had been drinking and was very intoxicated. We took Alicia to the hospital and they admitted her right away. They did a CT scan on her and there was no bleeding, she did have a concusion. It took the nurses almost two hours and twelve sticks before they could get an IV in Alicia, they finally had to put it in her foot. My Twin sister had to hold her down, so now Alicia is very upset with her and won't even let her hold her. I hope she forgives her soon. My sister loves her very much.

Good news, While in the hospital her platelet count went up to 61,000.

I'll update mor later. I am very tired. Hospital stays can wear you out even if it was only for 2 days.

Your Friend
Michelle


Thursday, July 7, 2005 12:40 AM CDT

Hello to all my new friends,

I am sorry I haven't updated you all on how Alicia has been doing. There hasn't been much change. Her Platelet counts have continued to drop, the last count was lower than the last. We have an appointment with Dr. Rosen on July 13th. They will probably schedule her Biopsy then. Dr. Rosen is her Hemotologist here in Wichita.

We went to the lake for the 4th of July. Alicia had a blast, it was her first time. She didn't go to sleep till real late I think it had to do with sleeping in a tent for the first time.

We are getting real excited about camp. There's only 36 days left!!!!! I am really looking forward to meeting everyone.

I will keep you posted on Alicia's counts. God Bless everyone who has given me their support.

Your Friend
Michelle