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.