Alicia's Journey with FA

ALICIA'S JOURNEY WITH FA

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

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

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

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

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

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

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

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

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

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

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

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

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

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 family
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

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

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

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)))

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

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

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

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

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

Thursday, June 30, 2005

June 2005 Guestbook Entries

Love the new pictures... and happy to finally put a face with your name :) Glad Alicia is doing so well. Hope you have a blast at Camp Sunshine.
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Thursday, June 30, 2005 7:52 AM CDT

Great Picture Michelle,

it is so cute of you and Alicia...that is wonderful that she is learning new sign language every day!! Praying for you both heaps and heaps....and Erika as well.

Love Charisse
Charisse Howard-Jones
Adelaide, SA Australia - Wednesday, June 29, 2005 8:30 AM CDT

Love the new pictures!
See you at camp.
Bret & Nanette Foster and Family
Ryan, Nicolaus, Courtney, Kaelynn and Dianna
www.caringbridge.org/tx/dianna
Nanette Foster
Lewisville, TX USA - Wednesday, June 29, 2005 8:16 AM CDT

hi Alicia, Michelle and Erica, I found your site on Angel Brandons site, My son was in the same hospital with Brandon and Marshall. He did not have FA but sure had his own set of problems. He to was waiting for a bone marrow transplant he had aplastic anemia. He also new sign language, cause he had a speech problem. He still was the love of my life. He passed away 1 month after Brandon, he did not get his bone marrow transplant, he did have a liver transplant though.

Alicia is such a beautiful girl

www.caringbridge.org/mn/dustin
Kris, Angel Dustins Mom
- Saturday, June 25, 2005 3:22 PM CDT

Hello all,
It has been a while since I signed in, but do keep tabs on every one, Glad to hear that you got accepted for camp. It will be a lot of fun, look forward to meeting you all in person. Hope you are having a great week. Take care and will stop again soon.

Hugs and Blessings,
Kelly Bennett
Marshall 12(21 months post BMT) Amelia 5 FA-G, & Nathan 2 Non-FA
~Marshall and Amelia~
Covington, Louisiana - Saturday, June 25, 2005 9:45 AM CDT

Hello Michelle and Alicia,
what a cute photo!! I can't wait until August either for camp! Just thought I would check on how you are all doing. Praying for you.
Love Charisse/ The Prayer Bears
Charisse Howard-Jones
Adelaide, SA Australia - Sunday, June 19, 2005 6:14 AM CDT

Hello Alicia, Erika and Michelle, It's me again, Rosey. Michelle, I'm a little worried about my last mailing. Has Alicia received her package? One was returned to me that I sent to another child as being unclaimed. But, others have received theirs. I hope Alicia is doing fine and enjoying herself. You are always in my prayers. Love and hugs, Rose
http://roseygirl7.tripod.com
Rose
SC - Tuesday, June 14, 2005 10:46 AM CDT

Hello Alicia, I hope that you are having a nice day. You are in my prayers and always in my thoughts. Love, Rose
Rose
SC - Monday, June 13, 2005 12:34 AM CDT

I love the new photo. What a cutie!!

Dianne Ploetz
Dianne Ploetz
St. Paul, MN - Monday, June 13, 2005 11:30 AM CDT

Hello Alicia, Erika, and Michelle, Wow, it sounds like camp is going to be a lot of fun. I'm thinking of you all and you are all in my prayers. Love and hugs, Rosey
http://roseygirl7.tripod.com
Rose
SC - Sunday, June 12, 2005 12:57 AM CDT

I didn't see these pictures last time I looked! They are so cute:-) I didn't know that Alicia had surgery on her hands to make thumbs. That is really neat. It looks really good. I think I signed your guestbook a little while back and said we weren't going to be able to make it. Well, a couple of the other mothers have pestered me (a good pester) and now we are going. We will make it work. It's just too important to go!! I think that would be so cute if Wesley, Alicia, and Emma signed to each other like Kristin wrote. Emma signs to her little friends and cousins, but they dont' always know what she is saying (often it's "stop" and "no" haha!). Can't wait to meet you!!

Take care,
Teresa
www.caringbridge.com/or/emmarose
Aloha, OR USA - Saturday, June 11, 2005 2:30 PM CDT

Hello Alicia, I like the new picture on your page. You are a pretty little girl. Thinking of you and praying for you.
Hugs, Rose
http://roseygirl7.tripod.com
Rose
SC - Saturday, June 11, 2005 8:40 AM CDT

YEAH! Camp is almost here. How fun! Wesley is excited to meet Alicia. I wonder if Wesley, Alicia, and Emma (if she can make it) will all be trying to sign to eachother. That would be so cute. Hope all is well!
kristin young
gorham, me usa - Saturday, June 11, 2005 6:59 AM CDT

Hello Alicia, Michelle, and Erika, I'm thinking of you. Michelle, I hope you have so much fun at camp. Alicia will make so many memories. I love you all. You are in my prayers. Love, Rose
http://roseygirl7.tripod.com
SOEW
Rose
SC - Friday, June 10, 2005 8:20 AM CDT

Hello Alicia, I have always wanted to learn sign language.
I'm vry proud of you. You are a special little girl. I love you. hugs, Rose
SOEW
HUGS AND HOPE

Rose
SC - Thursday, June 9, 2005 8:31 AM CDT

The Prayer Bears

Praying those counts will go up and stay up! Hopefully, we will get to camp this year too! See ya then!
Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Thursday, June 9, 2005 8:19 AM CDT

That's a bit frustrating that her counts haven't gone up yet - hopefully with more time they will. I know that often they do. How exciting that she is learning more sign!! Emma is as well. It's fun to see how quickly they can learn. Hoping and praying that things are going well. Oh...and just so you know, it looks like we might not be able to go to camp. We are moving to Texas a little sooner and we will be needing to pack during camp. Hopefully we'll be able to meet when we are in Wichita to visit my grandparents/other family.

Take care!
Love,
Teresa
www.caringbridge.com/or/emmarose
Aloha, OR USA - Thursday, June 9, 2005 2:10 AM CDT

Good Morning Alicia, I'm thinking about you. Michelle let me know if Alicia is doing okay if you have time. Alicia, I love you. Hugs, Rose

Rose
SC - Wednesday, June 8, 2005 9:20 AM CDT

Just checking in. Can not wait to see you guys at Camp! Big hugs!
Krisstina, Jo, & Jacy
caringbridge.org/ks/jojacybox
Cincy, OH USA - Wednesday, June 8, 2005 1:34 AM CDT

Hello Alicia, Dropping by to say good morning to you. Remember I love you. Have a nice day. Give your mom and grandma a big hug for me. Hugs to you, Rose
http://roseygirl7.tripod.com
dabbles and doodles
hugs and hope
Rose
SC - Tuesday, June 7, 2005 9:17 AM CDT

Hello Alicia, I hope you had a nice weekend. My weekend was very busy. I'm thinking about you, Erika, and Michelle. I love you Alicia. Let me know when you receive your little package I sent you.

sunshine on eagles wings
http://roseygirl7.tripod.com
Rose
SC - Monday, June 6, 2005 11:34 AM CDT

Good Morning Alicia, Erika, and Michelle, Sorry to hear about your computer. I've had computer problems before so I know what that is like. I hope you all have a nice weekend and Alicia feels well. Thank you for your nice comments. I have Alicia a small package ready to be mailed. Just something I made for her. If you will email me your address or an address where I can mail it. I love all of you. Love and hugs, Rose

Rose
SC - Saturday, June 4, 2005 10:37 AM CDT

Just checking in to see how things are going:-) Can't wiat to meet you guys someday!! Hope all is going well.

Take care,
Teresa
www.caringbridge.com/or/emmarose
Aloha, OR USA - Saturday, June 4, 2005 4:30 AM CDT

Hello Alicia, Erika, and Michelle, Good morning to you all. I hope Alicia is having a good day. Michelle, will you let me know how Alicia is doing this week. I'm thinking of you all and praying for you. Love and hugs, Rose
http://roseygirl7.tripod.com
Sunshine on Eagles Wings

Rose
SC USA - Friday, June 3, 2005 10:51 AM CDT

Hello Alicia, Michelle, and Erika, This is Rose and I just wanted to leave a rose for Alicia from Rose. Hope you all have a nice day. Alicia is in my prayers. Ilove you all. Hugs, Rosey

Rose
SC USA - Thursday, June 2, 2005 8:12 AM CDT

Hello Alicia, Erika, and Michelle, This is Rose back to say hi to you all. Let you know I'm thinking of you. Alicia I hope you are having a good day. I'll be back later to check on you. I love you bunches!!

http://roseygirl7.tripod.com
Sunshine on Eagles Wings Sending sunshine with love
Rose
SC USA - Wednesday, June 1, 2005 10:55 AM CDT

Wednesday, June 8, 2005

June 8, 2005

Sorry it has been so long since I've given an update on Alicia. She is doing just fine. We are still checking her counts every week but there hasn't been sny changes, her platelets are still low, but we are watching them closely.

Alicia is still learning more sign language every day. She comes home every day and teaches me a new word, I am so proud of her.

We are getting very excited about camp in august, I think I'm the most excited.

I will try to keep you updated more frequently.

Your friend

Michelle

Tuesday, May 31, 2005

May 2005 Guestbook Entries

We just wanted to stop by and let you know that we
are thinking of you! We hope that you have a
wonderful Memorial Day!
BIG HUGS,
Julie and collin
www2.caringbridge.org/ca/collinpresley/
julie presley
long beach, ca usa - Sunday, May 29, 2005 6:31 PM CDT

Hi Alicia and Michelle, its me Rose again. I just want you to know that Alicia and you are in my thoughts and prayers today. My little prayer group and I met this morning and we stormed heaven with prayers for Alicia. I hope she is doing okay today and resting well. Michelle keep your faith and trust in God. Faith can move mountains, he said it and I believe it. I love you very much. Hugs Rose
Rose
SC USA - Saturday, May 28, 2005 7:02 PM CDT

Dropping by to let you know I'm thinking of Alicia. Alicia, you are a beautiful little girl and loved by many. Michelle, I hope Alicia is having a good day and that you are too. You are in my thoughts and prayers. I love you
Rose
http://roseygirl7.tripod.com

Rose
SC USA - Friday, May 27, 2005 4:27 PM CDT

Dear Alicia and Michelle, My name is Rose and I live in SC. I'm praying for Alicia everyday. I also pray that God grants Michelle the strength she needs. Please know that you are in my thoughts and prayers daily. Love Rose
I love you both http://roseygirl7.tripod.com
Rose
Easley, SC USA - Thursday, May 26, 2005 4:56 PM CDT

We love making new friends. We are so happy to hear
that you are ok! You are in our hearts and prayers.
BIG HUGS,
Julie and Collin
www2.caringbridge.org/ca/collinpresley/
julie presley
long beach, ca usa - Thursday, May 26, 2005 4:25 PM CDT

Alicia
Just drop by to say hi an let you know that you & your family are very much in my prayers.
Sending love hugs & prayers your way.
Pam Sturgill / The Prayer Bears
- Wednesday, May 25, 2005 9:30 AM CDT

Hello Alicia! You are quite a pretty young lady! This is my first visit to your website and I am glad to hear your doctor appointment went well and you are doing fine. Hug your mommy and grandma! They are taking good care of you!
Kathy Markham (from Prayerbears)
Prospect (near Louisville), KY USA - Monday, May 23, 2005 9:47 PM CDT

Ooops! That's what happens when you are a Mom with too many web pages open and a kiddo running around behind you :P Sorry about the below post Alicia!

Heidi
Prayer Bear Heidi
NM USA - Monday, May 23, 2005 8:37 PM CDT

http://www.cancer.med.umich.edu/news/compound.htm

This is an article about a hospital using the type of treatment Dlyan is, MIBG, it's the university of Michigan. I wonder if they would be an option? I know Children's Hospital of Philadelphia was also doing a clinical trial with MIBG, and even though they aren't taking on new clinical trial patients, they might make a consideration with your situation? I have also hear that University of California at San Francisco uses MIBG. Maybe you could inquire with these hospials? Hope this helps...

((((HUGS))))
Prayer Bear Heidi

The Prayer Bears
Prayer Bear Heidi
NM USA - Monday, May 23, 2005 8:35 PM CDT

Hi Alicia!

I'm praying for your platlet counts to come up real soon!

(((HUGS)))

The Prayer Bears
Prayer Bear Heidi
NM USA - Monday, May 23, 2005 8:02 PM CDT

Hi Michelle...

I want to thank you so much for signing my son Brandon's guestbook. I'm so sorry to learn that your precious granddaughter also has FA. She is such a beautiful little girl. I will continue to check in often. My thoughts and prayers are with your entire family. Take care.

http://www.caringbridge.org/va/love4brandon
Tina Eshbaugh
Broadway, Va - Monday, May 23, 2005 5:47 PM CDT

checking
denise
wichita, ks usa - Sunday, May 22, 2005 11:47 PM CDT

What a gorgeous brave little girl you are !!!

praying for you always
Maria Liistro and family
Sammy-Joe Liistros family
Craigieburn , Melbourne , Vic Australia - Sunday, May 22, 2005 11:09 PM CDT

What a gorgeous brave little girl you are !!!

praying for you always
Maria Liistro and family
Sammy-Joe Liistros family
Craigieburn , Melbourne , Vic Australia - Sunday, May 22, 2005 11:06 PM CDT

Michelle, Awesome news about Alicia's lab results. YAY!!! So glad Erika is smiling again, too. Thanks for the update.
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Saturday, May 21, 2005 5:41 PM CDT

Hi Alicia,
What a beautiful and brave little girl you are..
I am so proud of you honey..We are holding you very
close in our prayers..
Trish/PrayerBears
Kingston, TN USA - Saturday, May 21, 2005 5:05 PM CDT

Hi Michelle, Erica and Alicia,
As the other wonderful FA families have stated, we welcome you and understand the difficult path God has chosen for you. For we all have walked in your shoes. The diagnosis of Fanconi Anemia is so hard to accept and the medical issues are complicated to learn. But the wonderful support group we have is a ray of sunshine. You are never alone. Our first child died at birth. We did not know that our daughter had Fanconi Anemia. Our second child was healthy as could be. Our third child, our second son, Peter has Fanconi Anemia. After his diagnosis at the age of 6 months, I suddenly realized exactly how true it was that every day I share with Peter is truly a gift from God. For every day he lights up my life, it is another day more than I had with his sister. And what a gift that is! Enjoy every day to the fullest that you have with Alicia. Empower yourself with as much knowledge as you can and draw strength from the other families. We are here for you. Many hugs,
Mary Ann Fiaschetti (Peter's Mom, age 5)
West Point, NY - Friday, May 20, 2005 7:08 PM CDT

Michelle, Erika, and Alicia,
I was so glad to hear from you the other night i miss you all very much and wish you could be going through my happy time like I was for Erika. This site is wonderful and i am glad you have found so much support and information i pray for all you everyday and think about you just as much i am sure you'll keep in touch with me more often as i will try to do the same tell everyone hello for me and i talk to you soon Love Ya
Michelle Campbell
Ames, Ia USA - Friday, May 20, 2005 4:03 PM CDT

I remember the day our doctor told us to rule out Fanconi Anemia. I went home and looked up on the computer what it was and spent the whole night crying on the floor of Wesley's room while he slept. All this information is just so overwhelming. It's a difficult, crappy disease. It's not fair and it will never be easy. Your family is just dealing with all this news. It's so new and confusing. All I can tell you is that YOU ARE NOT ALONE! We are all here for you. Your new FA family will understand like no one else will and they will embrace you and Alicia and your daughter like you are a part of us. I promise you that you will gain strength during any difficult time from the friends you will gain through this experience. It is, no doubt, a crappy experience but we will be there for your family. I can't imagine, although we've only known for a year, how hard it must be to get slapped in the face with all this so soon. It will be okay though. Take a breath and take one day at a time. This is a fight but you aren't fighting alone. Girl, you've got an army behind you. Wesley has had a very low ANC due to a virus, just a cold can make things crazy so I guess the best advice I could give is to pray for the best but be prepared for anything. You're doing the right thing by trying to become informed, it's important. It's so confusing but it takes time to understand it all. At camp, you can tell the new families from the "experienced" families. The veteran families ask these amazing questions and you sit there like, "I'm never going to understand all this" but it will come. If you are going to Cincinnati, Robin is a huge help with any questions you might have. Krisstina would be a big help too cause she's got twice the knowledge :0) Please just don't ever feel alone. You can do this and we're here for you. Talking about it will help too. I hope your daughter reads Alicia's site. I couldn't imagine having to deal with this being as young as she is. You've got a lot on your plate. One thing you will learn through this all is how amazing Alicia is. She will be your ray of sunshine, your hug just at the right moment, her kiss will fill you with warmth and the words, "I love you" will bring tears. Okay, I'm crying now so I'm gonna go. Plus I've taken up your whole guestbook. Tell Alicia Wesley sends her a hug and we'll be thinking of you all.
kristin young
gorham, me usa - Thursday, May 19, 2005 7:11 PM CDT

I am so sorry for what you are going through right now. It is a very scary time and we pray that all will be well with Alicia. We pray that all will be well and that her counts will go up again. Thank you for signing JOrdan's guestbook and checking on him, your prayers are appreciated
Darlene Brunson, Jordan's (FA) mom - www.caringbridge.org/ut/jordanbrunson
Delta, UT USA - Thursday, May 19, 2005 2:08 PM CDT

Dear Michelle, I'm sorry things are scary right now. We'll continue to pray for Alicia AND for you and your daughter. It's so much for any of us to deal with... I can't imagine being as young as your daughter and being faced with such issues. So difficult. Please let her know that we're here for her... that she can post her questions, her fears, her hopes... anything she wants to the list. It is a safe environment just for that.
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Thursday, May 19, 2005 6:04 AM CDT

dear Michelle and family,

I have already spoken to you today. this is a lovely website. Your daughter and grand child are absolutely beautiful. You know that you are in my prayers and that Alan and I will pray specifically for Alicia's blood results on the 20th. Remember that everything is not over....there is hope in whatever happens....lots of hope. I will pray that you feel God's comfort and hope.

Love Charisse

(FA Adult 27 years)
Charisse Howard-Jones
Adelaide, SA Australia - Thursday, May 19, 2005 2:59 AM CDT

The Prayer Bears

Praying the counts will be ok and that you all are having a wonderful day! I can't wait to see you all at camp! It is awesome!

Bear Hugs from Nicholas and Spencer's Mom!

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Wednesday, May 18, 2005 7:29 AM CDT

Hello,
I am stopping in to do my weekly check on my FAfamilies. Hoping that all is going well with all of you. I will be keeping all of you in my prayers. Alicia is just a doll!!
Hugs and Blessings,
Kelly Bennett
Marshall 12(20 months post BMT for FA)Amelia 5 (awaiting BMT for FA) and Nathan 2 (Non-FA)
~Marshall and Amelia~
Covington, Louisiana - Thursday, May 12, 2005 8:13 AM CDT

Just checking in on you guys! Happy Mother's Day. Belated. I spent most of it in bed sick! We love you guys and miss you!
Krisstina, Jo, & Jacy
Krisstina
- Tuesday, May 10, 2005 7:44 PM CDT

Alicia is growing up fast! I'm so glad for your family to have found a support group! and camp will be wonderful! Keep me posted!
Dr. Reddy
Wichita, KS USA - Tuesday, May 10, 2005 11:10 AM CDT

Just checking in on Alicia. I hope you all had a wonderful Mother's Day and we can't wait to meet you guys at camp. I feel somewhat guilty because we live about 20 minutes away from camp. It's exciting though because you'll get to meet families from around the world.

Anyway, give Alicia big hugs from Wesley and have a great night.
kristin young
gorham, me usa - Monday, May 9, 2005 8:36 PM CDT

Dear Michelle and Erika ~ Happy Mother's Day!
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Saturday, May 7, 2005 6:59 PM CDT

Hi Alicia,

It's Prayer Bear Sharon here again, checking to see how you are doing. Will be praying for you, sweetheart, that you will have a fun-filled weekend.

Hugs and prayers,
Sharon / The Prayer Bears
Memphis, TN USA - Friday, May 6, 2005 5:10 PM CDT

Hi. It's Wesley's mom again. I just thought I'd tell you that Wesley was also born with malformed ears. His ear canals didn't form so he wears a bone conduction hearing aid. We also are teaching him sign language. Maybe he and Alicia will be signing to eachother at camp. How cute! There are really great videos at www.signingtime.com for children. Wesley loves them and I know another FA child who loves them too. Just if you're interested. I'm glad you're finding support through caringbridge. We find everyone just so special. See you at camp!
kristin young www.caringbridge.org/me/wesley
gorham, me usa - Friday, May 6, 2005 7:11 AM CDT

Hello,
Welcome to the group. I know you will find alot of friends here. Your granddaughter is sooooo adorable. I hope that if you need anything you wont hesitate to ask. I am also dealing with FA (as an adult). Enjoy your grand baby and I will talk with you soon.

Maria Godwin FA-A (35)
- Thursday, May 5, 2005 9:19 AM CDT

Hi Alicia, It's your Aunt Sarah. I've seen your web page and it looks very nice. Always remember that we love you very much.
Aunt Sarah
- Tuesday, May 3, 2005 12:50 AM CDT

Alicia, we will be praying for you and checking in to see how you are doing.

Kristin Levine
Raynham, MA - Tuesday, May 3, 2005 11:04 AM CDT

Welcome to the Prayer Bears Alicia!! :) I will be praying for you sweetie. Let's get those counts back up!

(((HUGS)))

The Prayer Bears
Prayer Bear Heidi
NM USA - Tuesday, May 3, 2005 0:05 AM CDT

Hello! I'm so glad you started a website for your granddaugher. You can tell that you are just so proud of your family! Although it's tough, know that you are not alone. I have a two year old named Wesley who also has FA. We're very excited to get the chance to meet you all at Camp this year. It will be our second time. Krisstina and her daughters are a wonderful family and I'm so glad they are there to help you. Those are two of the most bravest girls you'll ever meet.

Well, know you are not alone and we are all here for you. We've only been at this a year so we're pretty new at this too but anything you need, just ask. You have a whole new family to lean on.
kristin young www.caringbridge.org/me/wesley
gorham, me usa - Monday, May 2, 2005 7:47 PM CDT

Alicia,
Wanted to stop by and say Hi!! You are a very beautiful little girl. Will stop back soon.

LeAnn Mooneyham /the prayer bears/
Baxley, GA United States - Monday, May 2, 2005 6:24 PM CDT

Hi Alicia and family,

Just wanted to drop by and say "hi"... I am a member of the Prayer Bears support group, whose mission is to pray for sick children all over the world, and I have added you to our prayer list. Erika, I know it must have been very hard on you to deal with this at such a young age, but you sound like you a wonderful mom! Alicia looks like such a sweetheart... her pictur just melted my heart. Am praying that God will pour His blessings on your entire family in the future, and that when a BMT becomes necessary, that a donor is quickly found.

Hugs and prayers,

Sharon / The Prayer Bears`
Memphis, TN USA - Monday, May 2, 2005 5:39 PM CDT

Hey I just wanted to stop in. I will be checking everyday. I can not wait to see you all again! She has gotten so grown up. Lots of Hugs

Krisstina King, Jo & Jacy Box
- Monday, May 2, 2005 5:17 PM CDT

Welcome All,
I just stop by to sai Hi an let you know that you all are very much in my prayers.
Love in Christ.
Pam Sturgill /The prayer bear
Eolia, Ky, - Monday, May 2, 2005 2:57 PM CDT

Welcome Michelle, Erika and Alicia. You are very lucky to have a good pediatrician that figured out Alicia's diagnosis so quickly! Most FA patients aren't so fortunate. You have the advantage of being able to be proactive on Alicia's behalf! Alicia, you are adorable and very blessed to have two such caring women in your life! I look forward to meeting you all at Camp Sunshine.
Lori Salo (mommy of Emily FA-A and Miranda)
Longmont, CO - Monday, May 2, 2005 11:38 AM CDT

Dear Michelle, Erika and Alicia, Welcome to the FA group. It's always bittersweet when someone new joins the group... on the one hand we're so sad that another little one has been diagnosed with FA; on the other, we're so thankful to have such a big, growing support group. I can't imagine facing something like this 'alone'... what did we ever do before the internet?! Hope you have a blast at Camp Sunshine. We went last year and it was awesome. We won't be going this year as we're headed to transplant, but can't wait to go back in 2006. Again, welcome. Lean on us when you need to. That's what it's all about.
Karen (www.caringbridge.org/fl/ty)
Melbourne, FL US - Monday, May 2, 2005 11:19 AM CDT

Alicia & Family,
We will keep you in our prayers.
Bret & Nanette Foster and Family
Dianna FA 7yrs, Ryan, Nicolaus, Courtney and Kaelynn
www.caringbridge.org/tx/dianna
Nanette Foster
Lewisville, TX USA - Monday, May 2, 2005 9:18 AM CDT

Alicia's Journey with FA