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Dylan’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.

My Story is the introduction to our CaringBridge site.

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Hi there! My name is Dylan Cole Moore. I am 5 years old. I love cowboys, country music, cooking, and the Andy Griffith Show. I love my dog "Corky" and my pony "Silver" very much!

My blood is "sick". I suffer from a rare blood disorder called Fanconi Anemia. There are only 500 cases in America.

My Mom says that Fanconi Anemia is a very rare genetic disorder with a very high frequency of bone marrow failure and many other problems. Patients with FA have a 75% chance of developing solid tumors at unusually young ages, including head, neck, esophagus and squamous cell carcinomas, as well as liver tumors.

I was diagnosed on September 22, 2004. At that time, I was experiencing mild bone marrow failure. Over the last two years, I have been monitored very closely through routine bloodwork and regular bone marrow biopsies. My family has spent endless hours doing research on FA and consulting with doctors all over the world.

Over the last few months, my bone marrow failure has progressed to severe. This leaves me very vunerable to possible life threatening infections and internal hemmoraging.

I am going to get some "new" blood! I am facing a bone marrow transplant, probably within the next year. Doctors are trying to delay transplant as long as possible because of the danger associated with transplant. Bone marrow transplant for FA patients is the single most difficult and dangerous procedure in medical history. However, if transplant is delayed too long, the chance of a successful transplant is jeopardized. I could also develop leukemia, which reduces the survival rate drastically.

The past two years have been very difficult for us all! My family has gained a great deal of strength from, not only our friends and family, but our whole community. We have been truly overwhelmed by the outpouring of support. It has made this horrible burden a bit easier to bear!

My Mom says that you are all very special people! Please continue to pray for me and my family. Pray that:

God grants us the serenity to accept the things that we cannot change;

Courage to change the things we can;

and

Wisdom to know the difference.

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths. (Proverbs 3, 5-6)

Latest Journal Update

Happy 18th Birthday Cody!!!!

Hey Cowboy,

Eighteen years ago today, your dad was planting corn when he got a call from me that it was time to come to the hospital.  Robbin kept saying that Cody was going to be born on Mama and Daddy's anniversary!!  She was determined that it was going to happen and the doctors said no way.  But guess what!  Rob was right and the docs were wrong!! He arrived at 11:11 pm ON MAMA AND DADDY'S ANNIVERSARY!!  I made a promise to God that I would be the best parent that I could be.  

I can't believe that my firstborn is 18 years old today!!!  I can't believe that he's getting ready to graduate and go off to college in just a few short months!!  I'm excited for him, but also wish I could REWIND the time!!!  Wish we could go back in time...when you were all still little.  When we were still a family.  We are blessed with the times that we had together and I wouldn't trade them for anything.  

Skyler will soon be driving.  Then I will blink and she'll be going off to college too!!

Watch over Cody and Skyler and keep them safe. Give Mama and Daddy a big HAPPY ANNIVERSARY hug for me and tell 'em I love 'em.

Night Cowboy!!  Better go get to packing.  Going to the spring roundup this weekend.

Love ya,
Mama







Comentarios

1 Comentario

Juli Evers
By Juli
Happy Anniversary!!! And, a big happy birthday to your new 18 year old, Cody! Wow, college. Already? Hard to believe!!!