Thursday, September 11, 2008

Please Stand By. . .

And the latest news from the lab is. . . please stand by, we are having technical difficulties. The coinciding of our need for genetic analysis fell at the time when technicians critical to the process had scheduled their vacations. As a result of these delays we have been told not to expect results before September 26.
In the meantime, we felt a brief musical interlude was in order, followed by a biographical snippet from Evan’s sister Morgan.
by Morgan Coleman 8/28/2008

We live in fear of a monster. Days go by where not a word passes our lips, but we know it’s lurking in the darkness, waiting to pounce on its prey, my brother. We anxiously await the tests, which currently reside in San Francisco. During this process, we wait, weep and pray. We know God is in all of this somewhere.
We all knew something was there ever since he was born. A giant congenital nevus. On the nevus a small bump which was biopsied after six weeks. But exactly a year ago August 28th, while running around in church, the bump got bumped. But not just bumped, more like brutally squashed. Overnight, it grew three times its original size. That night I felt so guilty because I was the one chasing him which caused him to rum into a chair. It was not a question, the bump was coming off. Not only because it was hazardous to his health, but it was one of the worst pains he had and would experience.
On November 15, 2007, he had the surgery to get the bump removed. They couldn’t remove the whole nevus because it covers from his neck to lower back and wraps around his flanks. The doctors estimated surgery time to be an hour and a half. It turned out to take 3 hours. I was in Mrs. Soto’s class when my mom called to tell me Evan’s surgery was over and they were still waiting for him to wake up.
On November 28, 2007, the diagnosis was back. Malignant Melanoma, the rarest of all cancers. Pediatric Malignant Melanoma occurs in 1 in 3 million people between the ages of 0-20. The giant congenital nevus occurs in 1 in half a million. So his condition specifically is 1 in 1,500,000,000,000 (1.5 trillion) and will probably not occur again in our lifetime. After this event, my parents initiated a prayer chain. We notified family, friends, pastors and employers. We began to research and gather medical input. Evan had a PET/CT scan of New Year’s Eve 07. The results came back negative, that very night. We were overwhelmed with relief and ready to start the year anew.
A little into the New Year, we were finding some interesting articles; but we were told they weren’t of much use after being and were rejected by the medical team. Instead Evan had what we were told was a Wide Margin Excision on February 1st, 2008, which required a skin graft. A week later, he went back under for a dressing change.
On May 15th, he had another PET/CT Scan. The results were still negative. But a new mass was visible to my parents. They were determined to keep and eye on this. On June 15th, the mass had grown. My parents sought out surgical consult the next day, and on June 17th they had a biopsy taken.
Unfortunately on June 22nd, the results were back, positive. It was here, it was real, and it was cancer. I remember, it was a Thursday afternoon after a long day of being in charge of the 1st grade class at my church’s VBS. My “co-worker” came with me to my guitar lesson later and we went shopping at Old Navy and got matching shirts. We came home and watched my favorite comedian on DVD, and that lasted about 2 hours. Then there was a phone call that my parents picked up and mysteriously a half hour later my friend was suddenly picked up for and unexplained reason. My parents told me to wait in the bonus room while they talked to Evan. I had the feeling in my gut what it was that they were about to tell me. My mom called me in. She had red, puffy eyes and so did my brother. They told me everything and I was speechless. I wasn’t the same person for about a week afterwards, and it wasn’t even me who was diagnosed. Oh, how he must have felt. But it brought everyone to tears when Evan piped up and said, “Its ok, Mommy. If I die, I know I’m going to heaven.” These results brought us shock, panic, fear, anger, guilt, commitment, grace and faith.
Ten days later, the medical team introduced an oncology surgeon. He suggested a wide margin excision (hadn’t we already had that?), which we were told, if done right, is life-threatening. The surgeon also recommended a second opinion, which we looked into.
That same day my dad got an invitation to present Evan’s case to the Nevus Science group on July 10th. The next morning the doctors also scheduled the wide margin excision, for July 10. But we declined.
From July 9th-11th was the Nevus outreach convention in Dallas, Texas. I thought it was kind of funny how people scheduled a conference for a bunch of people with a pre-cancerous skin condition in the middle of the summer, in one of the sunniest places in America, but whatever. Our family hope is restored because the literature we found previously was actually valid. We continue with caution.
We find a new medical team at Texas Children’s Cancer Center, which is the world’s leading children’s rare tumor specialist team. At this point a new plan is developed.
On July 16th, we started shipping pieces of Evan around the country. The tests will take four to six weeks.
On the first of August, the tests begin. The earliest we would get an answer is August 29th. This brings back one of my favorite lines from the movie Evan Almighty. “When people ask for courage, does He make them courageous or does He give them the opportunity to be courageous? When they ask for patience does He give them patience or the opportunity to be patient?”


1 comment:

Linda Zimmerman said...

Morgan, what a lovely piece of writing about a terrible topic. You are a wonderful writer, making me seem like I'm there and understanding just what's happening. Thank You. Love Aunt Linda and Uncle Paton
Evan, Our prayers and concerns are with you as you go through each day. You know God is with you. We pray for your continued strength, and emotional support, as you are undergoing treatments in search for a cure. We love you. Uncle Pat and Aunt Linda.