Alicia's Journey with FA: May 2005

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

Friday, May 20, 2005 10:10 PM CDT

ALICIA IS OK!!!! THANK YOU DEAR JESUS!!!!

I feel so much better, I'm finally going to be able to sleep soundly tonight.

Dr. Reddy assured me everything was ok for now. Alicia's platelets are still low but the rest of her counts were normal.We are going to have her blood checked every week now for a while, hopefully her platelets will go back up. She told me her platelets could go up and down for a long time, but for now everything is ok.

I guess I over reacted, but that scared the living day lights out of me. Alicia is my very, very, very best friend, she means the world to me, I guess i am just over protective when it comes to her.

Alicia did so well at her appointment, she is such a big girl. When we got to the lab to have her blood drawn she jumped right up in the chair and stuck her little finger out for the nurse before she was even ready. After the nurse drew her blood she stuck up her little thumb (which used to be her index finger) and said "good girl" I guess she is getting used to having it done. She didn't even cry. I was so proud of her. Afterwards we went across the street to mcdonalds and she had her favorite food which is chicken nuggets. she gets excited every time we pass a mcdonalds.

Erika had a really good day also. I haven't seen her so happy in a long time. She was the biggest brat on the way to the doctor, I don't think she slept well last night because she was very angry all the way there, But after we left she was all smiles. She appologized for the way she has been acting the last couple of days and even thanked me for every thing I have done for her and Alicia. She also got her favorite food at mcdonalds which happen to be chicken nuggets also, (they are so much alike.)I am so happy that she has some worry off of her, even though she has a child of her own she is still "my little girl". Erika is an only child and I raised her all alone her whole life, She is very spoiled.It made me feel so good to finally see her smile!!!!

I want to thank everyone who helped through these last two days. I never imagined so many people would care and take time out of their own problems to make me feel better. Thank you again sooooo very much.

Your friend
Michelle

Wednesday, May 18, 2005 10:43 PM CDT

Today has been a very bad day for me.

I called Alicia's doctor to find out her results from her blood tests and it wasn't what I wanted to hear. Alicia's platelets have dropped drastically. In January, when they were checked last they were low about 90,000, but when she was tested Friday May 13th, the results were around 60,000.

Dr Reddy, Alicia's Pediatrician, told me she had been on the phone with Dr. Williams at Cincinnatti Childrens most of the morning and they want Alicia to go there soon for a biopsy.

We are having her platelets re-counted Friday May 20th, Dr. Reddy said it could be possible that Alicia could of had a virus at the time her blood was drawn and we just didn't know it and that could of caused her counts to be low. Hopefully that is what happened but if not that means her Bone Marrow could be failing.

I am soooo scared. I don't understand any of this. My heart is hurting real bad right now, and I have been having trouble breathing all day. I don't know what I'm supposed to do next, I DON'T UNDERSTAND ANY OF THIS. I've been trying to read all the info I can find but it is so confusing to me.

Erika is not taking this very well either. She handles things different than I do. She is very angry. she has been snapping at everyone today. I am so worried for her.

Hopefully this is all a bad dream and tomorrow will be alot better.

I will let every know what the results are after she is tested on the 20th. Please pray for my best friend!!

Your Friend,
Michelle Colgan

p.s. I should of never took her for that test on Friday the 13th.

Wednesday, May 11, 2005 11:04 PM CDT

Sorry it has been a while since I updated everyone on how we are doing.

Alicia is doing ok. She gets her platelets counted in the morning so this will probably be a long night for myself.

We had a great Mothers Day. We went to my mothers and had a bbq. Alicia loves her Great Grandma. She gets away with everything over there.It makes me feel old when I refer to my mother as Great Grandma even though I'm only 35 years old.

I will keep you updated on Alicias counts just as soon as we find out.

Thank you again to everyone who reached out to us and gave us support, it makes all this madness so much easier to deal with.

Friday, May 6, 2005 3:00 PM CDT

Hello to all my new friends!!!

Alicia is still doing real well. We are going to the zoo this week end, I don't know who's more excited, Alicia or me.

We are looking forward to meeting everyone at Camp Sunshine, Alicia is going to have so many new friends, Wesley, Emma, Jo, Jacy, and so many more.

Thanks again to everyone who reached out to us, It means so very much.

Your friend,
Michelle Colgan

Tuesday, May 3, 2005 1:26 AM CDT

THANK YOU SO VERY MUCH!!!!!

It was a shock to me when I went to Alicia's web page and seen so many people had been there. This is all so new to me,I can't keep from crying so forgive me if at times this does't make since. I never imagined that there could be so many people that cared.Thanks again Kristina, this is helping me so much.

Alicia is doing so good. She has to get her blood checked again in 2 weeks, but I have very Hi hopes that they have came up and are ok.

She is teaching us sign language. She comes every day from school saying a new word. she can sign Please, Thank you, Stop, Cow, Duck, Pig, More, and I love you (I tought her that). she is so very smart I am soooo proud of her!! (I never imagined that my 2 1/2 year old granddaughter would be teaching me sign language).

I want to thank Sallie for helping me get Alicia's web page started. You are a true friend!! If it wasn't for Sallie this wouldn't have happened. Sallie is adding pictures of Alicia everyday. I wouldn't even begin to know how to do it. Thanks alot sal, your my girl!!