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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.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.



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

One chapter ends, another begins

Hey Cowboy,

It's funny how sometimes life is like a book.  And yes, some phases of life are like chapters in a book.  There have been several milestones around here lately.  First, Skyler turned 16!!  Then she got her driver's license.  That's really an adjustment for me.  I am so used to her being my sidekick everywhere I go.  Told her now she will probably never go anywhere with me again.  We will see.  She's sitting for the SAT as I write this.  Her first step in preparing for college.  College!!  What a scary word for a parent. All parents want their children to grow and prosper but it's hard to send them out into the real world without you.

Cody has spent his last day as a high school student.  It seems like just yesterday he started attending the Gingerbread House when he was three years old.  Last night, we all witnessed him walk across the stage at his VERY last high school function.  It was bittersweet.  I'm excited for him, yet sad that he will soon be going off to college.  I think even though he may not admit it, he is a little sad about it too.  As I sat and watched him over the last several weeks, I realized how much he has grown into a fine young man.  I watched as he and Lauren sang in the talent show.  They did such a great job.  His music ability has grown tremendously in the past couple of years!!  He is very talented and so is Lauren.  I hope that they will continue to pursue their love for music together.  At Bacalaurete, I watched Cody perform "You're Gonna Miss This". The lyrics state that life goes by so fast you shouldn't wish away a moment because after it's gone you're gonna miss it and you can't ever get that moment back.  How true. Lenn used to always fuss at me and tell me that I needed to slow down and stop living life at a full gallop I told her that I would only have you all for 18 years and that I wanted to stuff as much living into each day as I could.  Little did I know that it would only be 7 3/4 years that we would have you here!!  Those sure were 7 3/4 years full of life.  I will treasure every moment that God gave us with you.  

Please watch over both of them as Cody prepares to "leave the next" and Skyler is out on the highway!!  Everyone asks if I am going with Cody to college and I know that is impossible as much as I would like to, but I know someone I can send with him and that's you!!  We gave him your pocket cross for graduation so that he can carry it with him to college and keep it in his pocket to remind him of you and to remind him to keep God in his life each time he reaches into his pocket.  I know that you will be right there with him watching over him and guiding him along the way.  And I also know that you will be like the soldier riding with Private Malone and that you will be riding shotgun with Skyler and watching over her as well!!

Good night Cowboy!!   Love and miss you "to infinity and beyond"!!

Love,
Mama









Comentarios

1 Comentario

Juli Evers
By Juli
Congrats to Cody and Skyler!!! And, to you and Peanut, too, for your successful parenting!! :) Kids sure grow up fast, don't they? Although Dylan will always remain 7 years old in my mind, he was also wise beyond his years. Bet he got some of that from his parents, but also from his two siblings, too!