Monday, December 3, 2007

A New Hope

We surely do not wish to step on Mr. Lucas' feet, but the person at the heart of this column, Evan Coleman, is both the epitome of Hope and a fierce fan of the Star Wars franchise. This Blog is intended to share the current status, condition and well being of Evan as he makes public his ongoing battle with a lifelong challenge. He has been up until the last 2 weeks a very private person when it came to his medical challenges; but God has a way of speaking to us to share what is in our hearts when the the time is right. That time for Evan is now.
Evan was born February 16, 1999 and his most remarkable physical feature was not his length or weight, but a birth mark extending from the bottom of his neck to his buttocks and wrapping almost entirely around his torso. This birth mark had a name - Giant Congenital Melanocytic Nevus; and was distinguished by its variegated colors and textures.
Within 6 hours we had heard from 3 different doctors in 3 different specialties that we needed to see Dr. Tor Shwayder at a nearby teaching hospital, and thus Evan and we were plunged into the murky depths of uncharted waters with new knowledge that he was challenged by a very rare and potentially life threatening condition.
In the first six months of his life, Evan underwent a seris of biopsies and an MRI to help determine the extent, prevalence or existence of any immediately life threatening problems. Thankfully, there were none; however, there was always the underlying information & statistics. The entire nevus is a pre-cancerous lesion. There will always be a higher likelihood of melanoma. Melanoma may appear spontaneously. Sun exposure restrictions.
Life went on. Observations were made, standard questions were asked and answered. What we accept as normal would bring out the pained looks of shock from students and residents, along with some of the funniest quotes ever, "Has he always had this?", "Those look like flea bites, and I'm an exterminator." All unintentionally hurting, all said with the intense desire to help in a situation that they could not grasp.
We could bore you with the background details; but most clinical information is available on the web. In 2006 we moved from Michigan to North Carolina, and within a year and with the guidance and perseverance of Evan's Pediatric Dermatologist at Duke, Dr. Neil Prose, a plan was adopted to remove a bump on Evan's left flank. This bump had been with him since he was born, had undergone a punch biopsy in the first six months, and while it had grown slightly after biopsy, it merely mimicked the growth of the surrounding tissues as he grew.
2nd grade was the best two weeks of Evan's life. Third grade brought its own challenges as he had to change for gym in a locker room of older boys who were 'boys'. Evan dealt with this, and balanced the risks of surgery against the challenge of peer pressure, and with the help and support of his teachers became very adept at dealing with any issues that came up.
Dr. Prose pushed us toward the removal and eventually cajoled us all into taking the step of locating a pediatric plastic surgeon and scheduling a consultation. Then the unthinkable happened, on the Thursday night before Labor Day weekend, Evan fell awkwardly in our church and hit this portable computer mouse sized mass against a chair. Over the next 4 days we got the swelling under control and Evan was now begging to have his 'bump' taken off, and the sooner the better.
We met Dr. Hanna in early October, and by mid November surgery was sheduled and completed. The 'bump' had become a 'mass' and was now affectionately called a 'gross specimen' This was then reviewed by the hospital pathology lab, and when no definitive diagnostic determination could be made the specimens were sent to Harvard for a second opinion. And so it was that on November 28, 2007 a new clock started, the cancer survivor clock; a 5 year countdown timer as we heard the words we hoped we would never hear, malignant melanoma.
And this is where this blog is born, for Evan's immediate reaction the day after surgery when he looked at his back was "It's a dream come true" in the place of the 3" x 2" x 1.5" bump was a 5 1/2" incision where before there had been a protuberance. This was a happy and joyous day because Evan felt that he had been made whole because 'it' was gone. He immediately became okay with people knowing about his condition and okay that they pray for him, and could we tell the pastor about his surgery. With one operation his entire world had opened up for him.
At this time, Evan is doing great, truly better than ever. Medically we are in a wait and see mode of assembling a team, evaluating slides and tissue samples for better understanding. The clinical diagnosis as it stands is spindle cell malignant melanoma, with pathological measurements of 7.3 cm, 4 cm, and 1.9 cm, which places it either as a stage 2b or stage 3; however, there just is so little data on melanoma in children let alone information on melanoma within the context of a GCMN that few would be brave enough to render a prognosis.
Spiritually he is a child of God and has the strength of Angels and the renewed heart of a frisky 8 year old. We have notified and been notified that many hundreds of people and tens of churches have added Evan to their prayer lists. To all of those who hold Evan up in prayer, thank you, there is a warm comforting presence of the Spirit which has descended on our house and appropriately brought us Peace.
In the coming days, weeks and months ahead, we will do our best to keep this up to date and keep all who are interested informed. Part of the deal with Evan was that we would show him doing the things he loves, Legos, PS2, Rokenbok, and all things Star Wars.
Thank you for your interest, prayers, and ongoing caring support.


Cindy said...

Evan though you do not know me; I know you through your father...I believe you are an awesome young man who is very strong and brave. You have been in my prayers for several weeks and will conitue to be. Continue to hold onto the peace and hope that only God can give you. Faith sees us through so many trails and God's grace keeps us strong. I prayer you feel the strength of all our prayers....Cindy Mangrum...Heb 11:1

Mary said...

Evan, May God continue to look over you as He has since the day He blessed us with YOU!
We pray for you every night and know you will keep the fire that shows in that grin on your face and sparkle in your eyes!
We love you Evan!
Aunt Mary, Uncle David, Jeremy, Katie and Riley

janet said...

Hi Evan,

My name is Janet and I am Aunt Mary's sister. I know what a warrior you have become. Please know that you and your family are in my prayers, and prayers do work!

Be strong and Use The Force Luke!

sheri said...

Hi Evan.
I am Sheri, your Aunt Melanies best friend. I am AJ's God mother. Somehoe God connects all of us together in His way. I have known you through Melanie since you were born.
I have and will continue to lift you and your family in prayer. I am happy to know that you and your family feel the calmness of the Spirit of the Lord in your home.
Godd bless you.

Kendra said...

Hey Evan! What's up? I haven't seen you in so long...I haven't had anyone to share my french fries with. You look pretty handsome in that picture! Can't wait to read more about you getting better. See ya! Kendra

Mrs. Jost said...

Even, Thank you for allowing me to see you. You are strong. Remember God loves you Even and you are only given what HE thinks you can handle. Be brave. You are in my Prayers. You are going to to do great things Young Even. May the Force be with you:)
Mrs. Jost ( Andy's mom)

Mommy said...

Hi Evan, Love mommy
p.s. this is a test, only a test of the mommy broadcasting system

The Carters said...

My mom and I have always known you're quite a special little gentleman. And now we realize it even more, for you have a certain glow that warms our hearts whenever our eyes meet yours. Perhaps it's the same look one of our deacons said an elderly woman at a nursing home saw in him whenever he visited. She exclaimed that she could see Christ in this man's eyes. Well, we see Christ is in you and that HE walks and talks with you daily and tells you that you are HIS and HE is with you always. May you continue to be the sweet, fun-loving fellow you are, and know we have faith and know---not believe---but truly know--- that this rough spot in your life you will overcome and handle like a champ. Be blessed.

Love always,
Your next door neighbors, The Carters & Mrs. Janie

Anonymous said...

Hi Evan: You don't know me (I just know someone who knows someone who knows you :) ), but my family and I will pray for you and your family. I'm so glad that you know Jesus!! Aren't we so blessed to know that God is the one looking after us? With lots of love to you and your family!

Evan :) said...

Thank you guys for your prayers. Your prayers help me a lot. Again,
thank you. Love,Evan

Sissy said...

Dear Evan,
You are very strong! I know God's spirit is with you and in you. You can trust Him for everything, and even when you feel alone, without a friend, or even hopeless, He always has a shoulder for you to cry on when you are sad and shoulders to ride on when you are happy. And remember this above all, God has already won your battle and you belong to Him. HE LOVES YOU SO MUCH!!! And I love you too.

Love in Christ,
Sissy :)

Aunt Linda and Uncle Pat said...

Hi Evan, You're in our prayers. I'm excited about your science fair project, and your band concert. You are special to everyone who knows you and loves you. Our family thinks of your family often and we're praying for your returned health. When you use your quilt, I hope you feel the love that we are sending you. Love, Aunt Linda Uncle Pat , Matt, Tim, and Beth

Patrick said...

hi Even im 8 to.I saw you like legos.I love legos.I hope you get well.
Patrick Talley