Dylan’s Story

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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 Spring!!!

Hey Cowboy,

It sure has been crazy weather around here.  We had no snow, sleet, or ice until February!!  But the heavens must have been saving it all up because we have been bombed with all kinds of wet stuff here lately.  Betty Jeanne said one reason she moved back to the south was to enjoy mild winters!  Well, she got fooled didn't she.  I enjoy a nice snow every winter.  Seems like all the "hectic" in our life slows down a bit and we get to spend some quality time together. The first storm had so much ice that Skyler had to stay put.  Couldn't take a chance on her falling on the ice while she is recovering from her surgery!!  Cody had the flu and didn't get out.  It was a blessing though because it gave them both a chance to rest without missing school.  The next storm was 8" of white fluffy snow.  The kind that's fun to play in, just right for snow cream, and not as dangerous as the sleet and ice!!  So we ventured out and played just a little.  Didn't want Skyler to overdo it!!  We spent some time sledding and 4 wheeling with family!!  When I was making the snow cream, I thought about you teaching the folks in Minnesota how to make snow cream.  You were flabbergasted that they had never heard of snow cream!!  I'll never forget the look on their faces, especially Juli's, when you told them to be careful not to use any yellow snow!!!  I have so many wonderful memories of us playing in the snow and making snow cream and hot chocolate.  I will treasure those memories forever!!  I miss you desperately every day, but on snow days, I miss you more.  I miss you helping me make cream, snow men, and miss those squeals of delight from sledding and that belly laugh that you always laughed when your Daddy would throw me off the sled!!

Spring is here.  The daffodils are blooming!!  Every time I see one I think of you!!  We are all hoping for better weather now that Spring has arrived. Cody will be 18 in a few weeks.  Skyler will be 16 soon.  There won't be too many of those quality snow days left while they are living at home.  I read an article recently titled "I'll never tell her to hurry again".  It was written by the mother of a 16 year old.  She goes on to say that when her daughter was little, she was always rushing her to put on her shoes, brush her teeth, do her homework.  Not that she is 16, she says she will never tell her daughter to hurry again because the years have flown by so quickly and she realizes that she only has 2 more year with her daughter living at home, that she wants time to slow down!  She's a smart lady. If only we could slow time down.  Or even freeze it.  I am excited that Cody will be graduating in less than 3 months, but it's also bittersweet.  I'm going to miss him terribly when he goes off to college, but I am so proud of the young man that he has become.  I just don't know where the time has gone!! 

Lenn used to tell me that I needed to slow down, that I was trying to cram too much living into one day.  My reply to her was that I was only going to have y'all for 18 years and I had better cram every bit of fun in that I could.  Little did I know that it would only be 7 3/4 years for you, but man ol' man.  The picture frame that I have in my office says it all.  "It's not about the years in your life....it's about the life in your years!!"   We lived life to the fullest, didn't we?  I think of all the special times, the trips, and even the simple pleasures like at the end of a day, when life did slow down and Cody and Skyler were in bed because they were in school.  You and I would always cuddle up in my chair or in bed and watch "Barney and Andy".  I will never forget that first year we went to Mayberry Days!!  From the 7 am wakeup call that you gave us by jumping up and down on our bed saying "wake up wake up, I have got to go to Floyd's Barber Shop and get my hair cut, to the expression on your face while you gently rubbed your hands all over the statue of Andy and Opie headed to the fishing hole.  You never said a word.  The expression on your face was truly priceless.  I can see it in my mind right now. 

A good friend of ours that has lost a sister said that grief is like the ocean waves.   How true.  The emotions ebb and flow.  Just as the grief seems to subside just a bit and you step out onto the wet sand another wave comes rushing up and overpowers you....sometimes even knocks you down.  When you are under that wave, not able to breathe, you wonder if you are going to survive. But you have family and friends and loved ones that need you and love you and depend on you.  So, with their support, they lift you up out of that wave and help you get back on your feet!!    One of those ways is to host Dylan Days!!  There are so many people that support our family through Dylan Days!!  Without all of their help, it would not be possible to "pay it forward"!!  

Tonight, I pray for Lisa Peacock's family and for Lisa Whitby and her family.

Night Cowboy!!  Love and miss you more than all of the flakes of snow we had this winter!!