Saturday, September 27, 2008

No news, Good news, and Bad news. . .

Another interesting day in the medical life of Evan Coleman. Friday, September 26, 2008 saw Evan in Detroit seeing Dr. Tor Shwayder (Pediatric Dermatologist) where photos were compared from 6 days of age to 6 years of age to current time. Conclusions. . . fascinating situation, no historical context, consider seeing Dr. Marghoob, consider CGH of 6 week sample from same area on Evan's back, and continue to wait, watch and see. At the same time in San Francisco, Dr. Bastian (Geneticist with interest in pigmented lesions) was getting his first draft of his report ready. Dr. Bastian was kind enough to give us a call with the preliminary results, medical conclusions and proposed plans of action.
We haver not received his final written report, and so the information shared here is paraphrased from a half hour conversation while the author was driving down a freeway during Detroit rush hour.
There are chromosomal abnormalities, but they are not consistent with melanoma. The histological presentation is sarcotamous (like a sarcoma – soft tissue malignancy). There is no record of any person having a sarcoma arising in a GCN. When given Evan's clinical history, Dr. Bastian expressed a profound curiosity and offered to study not only the current tissue, but could we get tissue from the original sample taken when Evan was 6 weeks old. This he offered to do of his own volition in his private lab. His gut instinct is an atypical proliferative nodule with sarcomatous presentation, something that has never been seen before.
In conclusion our fears shift from one type of cancer to another (melanoma to sarcoma), testing will continue, and we continue to be vigilant observation concentrating on lymph or glandular involvement, areas of breakdown, and generally protecting the area in question to avoid unnecessary contacts and traumas. Thank you for your continued prayers. We find ourselves continuing on the path of the unknown, and your thoughts and prayers offer constant light to our way.
Combining work with pleasure is a requirement for a young man on the go. So Evan engaged in some fun activities with friends and family while out of town. First he went with his friends Courtney, Lily and Ethan out buying property in Detroit. As you might have heard, property values in Detroit are not what they used to be. Here, Ethan is acquiring a couple of homes for $200. Following a late night out on the town with his friends, it was a relaxing tractor ride into the orchards of Michigan to pick bushels of apples with family. Later today Evan will be cutting up the dance floor at his cousin's wedding. No pictures at this time, and the videos may be classified, but we'll try to smuggle some into the blog for the next episode. Till next time . . .

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.
video
EVAN
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?”


THE END