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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.



Friday, April 29, 2005

A little history...

My name is Michelle Colgan. I am a very proud grandma of a little 2 1/2 year old girl. Her name is Alicia Reed.

She came into this world on November 18th, 2002. Alicia was breech and had to be delivered by a c-section.Alicia's mohter (my daughter)was very young. She was only 16, so as you probably know she was very scared.

All went well during the delivery, Alicia was so beautiful!! The first thing I did, as any proud grandma would, was to count her fingers and toes. I had to count for a second time because I only counted four fingers at first. But my first count was correct. Alicia didn't have any thumbs. I tried not to act upset because my daughter was lying on the table not knowing anything, but then a nurse said "oh look she doesn't have any thumbs and shes missing a ear." I could of killed that nurse at the time but I was to worried for my daughter and granddaughter.

The doctors checked Alicia out and said she was fine and put her in my daughters arms, Erika had the biggest smile I have ever seen her have. I left the delivery room and started to bawl like a big baby.

The same day the pediatrician that we had chosen for Alicia came to see her. Her name is Dr. Rebecca Reddy.She examined Alicia and said she would be back the next day.

The next day November 19th, 2002 was a day I will never forget. Dr. Reddy had brought in a whole lot of litature on Fanconi Anemia, She said she had researched every thing she had found wrong with Alicia and she was 95% sure that Alicia had Fanconi Anemia. She told us that this was a terminal genetic disorder, and that she would sooner or later need a bone marrow transplant. She said that she would have to send a sample of her blood to New York, and it would take 2 weeks to get the results. That was the longest two weeks of our lifes.

During the two week wait my boss pulled info of the internet on Fanconi Anemia and I tried to read anything I could about this disorder. My boss contacted Suzanne Laucke, the family support cordinater for the Fanconi Research fund, she called me and offered her support and also got me in contact with someone in my home town of Wichita Kansas who was going through the same thing my family was going through. Her name was Krisstina and she helped me a lot. She brought over to my house a lot of info on Fanconi Anemia and we got to meet her two special girls that have Fanconi Anemia also. (thanks Krisstina)

When we got the results back from Alicia's blood test I had already began to accept that they would be possitive and they were.

The past two years have been a battle for my whole family, but it has been the hardest for Erika and myself. Erika is still very young and at times I believe that she is in denial. She is a VERY good mom, she makes sure Alicia goes to all her doctor appointments and she is very protective of her, but in most I try to deal with all this madness myself. Erika just wants Alicia to be treated as normal as possible.

In the 2 1/2 short years that Alicia has been with us she has been through 3 surgeries. They operated on her eyes on her very first Halloween. She has also had both of her index fingers moved to thumb positions (its called some big medical word). She uses her hands very well, I am glad we made the choice to do that. She also has to see several specialists, and we took her to Cincinnatti last July to have her evaluation. (thank you to everyone there who helped us, most of all thank you to Robin)

Alicia is doing well at this time. Her blood counts are kinda low but nothing to worry about now. We are looking forward to going to Camp Sunshine in August.

I will keep everyone updated on her progress.

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