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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, May 3, 2005

May 2005 Entries

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!!

1 comments:

brandybarnard said...

ASL

say sit love

I love you


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