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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

The Teddy Bear

You don't have a heart cause I don't hear it BEEPING!!
You don't have a heart cause I don't hear it BEEPING!!

Hey Cowboy,

It’s been a tough week. As you know, Skyler had surgery at CHKD on Tuesday.  Thanks for being here with us.  We were all surprised when Skyler reached in her overnight bag and found that bird that she made for you when we were in Minnesota along with a picture of the two of you.  None of us knew it was there but we know how it got there, don’t we?

Her breastbone was putting pressure on her heart and lungs so the docs placed a metal bar in her chest and raised the breastbone to relieve the pressure. The docs said that surgery went really well.  The surgery is the most painful surgery that they do, so she has been in A LOT of SEVERE pain.  She sure has been tough!  She has cowgirluped up for sure.  Just like you did!!  We are still here in the hospital.  She is progressing very slowly but as long as she is progressing, we are good.  I pray that soon she will be able to eat and be pain free.

On Thursday, the Child Life Specialist came by and brought her a teddy bear.  Skyler was sleeping so she chose the bear for her, and placed it on the bed by her.  I didn’t pay much attention to it, but when I went down the hall and came back your dad asked me if I picked out the bear.  I told him no and he told me to look at it.  The bear’s name is DYLAN!!!  That proves that you are here watching over her. 

It’s been hard being here at your old hospital.  It’s bringing back some bad memories,however, it’s also bringing back some good memories as well.  You really did enjoy your visits here (except for the blood draws and bone marrow biopsies) thanks to the staff.  They always made it fun.  Remember the day that Dr. Owen listened to your heart rate then gave you the stethoscope and let you listen to his heart?  You said, “Dr. Owen, you must not have a heart, cause I don’t hear it beeping!” Oh you were wrong there young man. Dr. Owen is one of the finest men I know with an AWESOME heart.  He proved that over and over.  We will always remember how good he was to you.  He has a heart the size of the tin man!!  I hope Skyler feels like stopping by the clinic so we can visit him and the others before we leave!!

I’m sitting here in the window seat next to Skyler.  She’s napping.  Just saw the helicopter land.  Special prayers for the patient in it and their family. 

This is a big city.  You know we aren't much of city folks.  Never have been.  The ships are coming in the harbor.  It's beautiful at night with all of the lights reflecting off of the water.  Like Rob said though.  They don't even have grass.  We are so fortunate to be able to live in a place that has grass and trees, the lake, the farm, a place to ride, fish, swim, and do all the things that country folks like to do!!  BUT I am glad that the city is here for us to visit when we need it.

Bye Cowboy!  Love and miss you more than all of the blades of grass that are missing in this big city!!

Love,

Mama

Comentarios

1 Comentario

judy taylor
By Judy Taylor
Prayers for all. Praying that she gets better every day. And yes, Dylan is certainly with you all.
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1 person hearted this