Where to go from here?

Information continues to come in. A little here and a little there. Our latest information is encouraging, but the advice was discouraging. The information was that the tissue samples which have been genetically analyzed are neither melanoma nor sarcoma; however, the microscopic cell presentation indicates a sarcoma like growth pattern.
The advice we sought was requested without a definitive diagnosis; we asked for a gut instinct. What we got was a kick in the gut. The gist: seek a skilled cancer surgeon familiar with both GCN and sarcoma resection; and a skilled reconstruction/plastic surgeon. Together they would perform a wide margin excision of all potentially affected tissue and reconstruct the body around the hole that would be created.
We could rant, cry, or scream; We’ve done that all before, and We’ll likely do it again, at an appropriate time; however, that time is not now. Now is once again a time for action. Our plan is simple: Pray - for guidance, wisdom, and intersession. Do the research, consider a team, have different tests ordered and completed, and pray some more. Not necessarily in that order. We did not hear the news we wanted to hear on Friday; but we got sound advice - no matter what the mass is, we must come up with a reasonable plan for approaching its existence.
In summary. Evan has a tumor/lesion/growth; no doctor knows what it is; many know what it is not - including normal, melanoma, sarcoma, proliferate nodule; Our quest takes two paths simultaneously: What is IT? What to do about IT? In pursuit of the answers we return to North Carolina, and UNC Chapel Hill.

In the latest episode of medically inspired geo-adventures of our hero; Evan ventured into the Big Apple. One more time, thank you to all who have so generously given that we can find time to distract him from 400 lb gorilla in the room. We would list the sites, but sometimes its just fun to see the pictures and put the sites in your own words.

Your continued thoughts and prayers are a blessing and constant source of comfort to us all. We shall continue to keep you informed of personal and medical news as it arises.

And now. . . a taste of the Big Apple!

As the many entries to this blog attest, the writer is not often at a loss for words; but the circumstances of the past few weeks have rendered such a sense of overwhelming love that any response will not do justice to the originators of: prayers, resources and assistance. With that patchwork excuse as a backdrop, a best attempt at storytelling and gratitude will now be attempted.
Let us start at the beginning. First and most importantly thank you God. For those who are new to our story, we have a deep and profound faith in God and a strong belief in our understanding of His interactions in this world. At this point it would not be too strong a point to say that we believe in miracles of divine origin; and that many of the doctors and scientists who we have dealt with, do not. None of this story, or our role in it would be possible without divine intervention. It began almost a year ago, and now has Evan scheduled to see Dr. Marghoob at MSKCC in New York City on Friday. It also has us waiting for a Christmastime arrival of news on a second round of genetic testing being done.
For those who offered prayers that we would be able to schedule an appointment in NY, thank you. It was not easy to get done, and without your encouragement and persistence, it might have been impossible. For those who have been following the ‘new’ science of genetics and its impact on Evan’s diagnosis/prognosis, thank you. The biopsy from 9 and a half years ago was identified, and had not been destroyed, and has been sent to UCSF for Dr. Bastian’s next experiment which will help identify if the cells from 9.5 years ago have the same lineage as those taken last November. We have yet to hear in the results from the comparison of November ‘07 to June ’08, but that bridge can be crossed at the same time as this next round of testing.
It seemed that scheduling was the easy part after it was done, and we faced the realities of dwindling resources and a trip to one of the most expensive destinations in the world, New York City. On the day we began to make arrangements to go to New York, we were hit with an unexpected personal economic challenge; the author was laid off by his employer. A good friend told us that this was a ‘panic’ situation, but we knew what we had to do for Evan, and nothing was going to get in our way. We made plans and got on our knees and were at peace with what would happen next. This was not the first time on our knees, nor will it be the last.
Those named next in this story would likely not wish for the credit, rather they just wanted to do what they could to help Evan. When we had to go to Texas in July; thanks is extended to Nana and Poppa, Granddad, Beth and Bart. Each of you and your offerings were an answer to our prayers. To each of the doctors we have encountered who treat Evan as a person, not just a ‘cool’ science experiment, thank you. Each of you is an answer to prayer. When we asked for monies to help defray medical and travel expenses; Val, Roger & Rex your help has funded the genetic testing to this point; Joe, Kelli, Dustin and the whole crew at Cape Fear Marble and Tile you helped us retire high tech testing co-pays; James, Denise & Blake and the WakeMed Health Park family your generosity has only been exceeded by your prayers. Each of you is a member of our family or such close friends that you might as well be family. And this would be a great end to this story, but . . . God has not just filled our cup to overflowing, He has taken our cup and dropped it in the barrel. We have not been blessed with just a spill; we can swim in the sea of blessings that have been poured out upon us in the last week.
We understand that the two most important commandments are: To love your God with all your heart, soul and mind; And, to love your neighbor as yourself. Many ‘smart’ legalists have thought, and at least one said, “But, Who is my neighbor?” The answer to the question is shared with us in the parable of the Good Samaritan.
Now, let me tell you of our neighbors; near and far, real and figurative. I will start with our neighbors in our subdivision who under the guidance and inspiration of Heather, a mother of 3, is in the process of raising awareness of Evan, the hope he represents, and in raising funds for medical, expenses, travel and research. Let me also tell you of our school ‘neighbors’ Tim & Debbie, Sheryl & Todd, Sharon, the Elementary MIT group, and the many teachers; all who pray for Evan, our safe travels and constant encouragement. They also help transport; provide housing and guide Morgan while we have/will travel.
But what do you say about the neighbor you have never met? Till last Saturday. What is to be said when that neighbor offers to fund a medical consultation visit in its entirety on the word of a fellow believer? 10 days ago, sight unseen, because he sensed God calling him to respond. How do you react to that person inviting his closest friends (Law partners, University Trustees, Rev. Al Sharpton, and fellow alumni of his university) to pray for Evan? His name is Willie Gary, and Evan is proud not just to call him neighbor, but friend. We see him as a symbol of God’s all powerful color-blind grace and mercy, a walking example of blessings being shared beyond those being received.

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 . . .

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.

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

Summer of Fun vs. Anxiety of the Uncontrollable

A musically gifted frined from NY shares a lullably

It is difficult to watch a summer come slowly and unceasingly toward its end. This year perhaps more so as we savor every hour of every day not knowing what is yet to come. The feeling here is one of nervous anticipation, a calm before a potential storm, the hazy days of summer making way before the possibility of a hurricane.

Evan sitting on the Texas Children's Gecko

Here are the facts. We have chosen a plan that involves waiting for genetic results. That we wanted this testing done 8 months ago is spilled milk or water under the bridge. The results will be back sometime in the first 2 weeks in September. The offending cells have not gone away and a new mass is forming in the same location as the older removed lesions. Every physical symptom (feeling cold, feeling hot, aches, pains, a cough, etc.) is filled with anxiety and guilt ridden doubt. Evan does not have any swollen glands (a good thing) he continues to act, play, practice and act out just like every other 9 year old boy.
This portal for information is increasingly challenging to maintain. We have a plan, but the eager desire for information on our part is echoed, mirrored and amplified by the sincerest of question, “How’s Evan doing?” To maintain a degree of normalcy we throw ourselves in to the activities of the moment, leading hyper-active lives. Authoring a blog about the trials and tribulations facing a boy and his family as they face the black cloud of rare childhood cancer is not normal. So, we throw ourselves into work, play, study, preparations for the new school year, and for the moment we prize every moment in an effort to pry a little more life out of every minute. We have an understanding that to dwell on the unknown, the uncontrollable is to fall firmly into the old Chinese proverb, - Anticipation of death is worse than death itself. We must seize the day, Carpe Diem. After all the past was yesterday, tomorrow is the future, and God has given us this day, that is why it is the Present. This is the day that the Lord has made, and we shall be glad in it.

In the meantime, cousins come from foreign lands (Carew and family), other cousins get married (Matt & Melissa, Beth & Tim), another cousin came from another state to visit (Meg) and other cousins email (Gareth and family, Jeremy, Katie & Riley) And we are about the business and joy of lives being lived. For it is a more pleasant place to reside in the joy of today than to seek out the deep dark, morass of the ‘What If’s?”
To all who have emailed Evan at Evan@e-nevusnotes.com, thank you. To all who have and continue to pray for us, thank you. To all who have brought meals, or invited us to break bread in their homes, thank you. To those who have given us their hard won PDO and PTO, we say ‘Thank you’. And to all who have donated monies to “Evan’s Fund”, thank you.Food Glorious Food . Meeting friends in West Virginia

IN THE LATEST EPISODE OF OUR SERIAL, WE FIND OUR HERO . . .

Evan had the most awesome time getting a personal private tour of the CISCO international headquarters and lab. We’re not sure if our tour guide will get in trouble for sharing this news, but Evan couldn’t stop talking about it for the next two days. What an awesome friend, the masked man of CISCO shall remain our secret, but way cool. Lunch at the world headquarters and then half an acre of rack mounted servers and networking. Evan has his eyes set on a future employer.
The plans for the Science Fair continue. For a brief history, 2 years ago, Evan built a LEGO robot and programmed it as part of a demonstration, deemed too young to have done it by himself, he did not place. Last year after writing to businesses, accumulating all the parts, and building the experiment he demonstrated and scientifically broke down the energy and financial benefits of different types of lighting (Incandescent, CFL’s and LED’s) 2 years younger than the oldest competitors, Evan placed 4th in the State of North Carolina. This year he wants to build a new computer (he already built his first in 2005 and is still using it) Not only does he want to build it, he intends to video/photograph the steps, and present the project on a multi video display using presentation software detailing its construction, it’s features and it’s benefits. Here is Evan’s long awaited list of supplies to be acquired to begin building his computer.

Zalman Reservator 1 V2 fanless water cooling system (www.xoxide.com/zalman-reservator-1-v2.html)
Gigabit Desktop Network PCI Card
PCI Multichannel Sound Card
N1 wireless desktop card
Sunbeam UV LED UV Blue reactive clear case
ATX Full size motherboard
Quad core or similar CPU
Video PCI card capable of HDMI, XGA, DVI and S-video
4 GB ECC RAM
Tuner card
DVD Combo Drive
500 GB internal HD

From a parents stand point this is over the top, outrageous, and completely awesome. How or why would one discourage this sort of creative ambition in a child? So, if any of you, the readers would be interested in encouraging this behavior, please contact Evan by email (Evan@e-nevusnotes.com), I’m sure he would love to hear from you, and share the mad grandeur of his plans.
Thank you to Meg for giving the family a reason to go to the beach, here are some pictures of Evan in his Australian surfer/sun suit playing in the West side of the Atlantic Pond

Morgan, Cousin Meg, and Evan

Evan, just waiting on a wave

We're Back!!!!

The potential for the length of this blogpost might use astronomical units for accuracy of length. If we thought the previous weeks were full of information, they could not hold a candle to the amount of knowledge we gathered in 3 days in Dallas, and 1 day in Houston. I will for the sake of the reading publichit the high points here, share some pictures, and most importantly move Evan's email address to the top.

Evan can be reached at Evan@e-nevusnotes.com.

1. The conference was awesome. Tons of information, coupled with new friends, old friends and the laughter of children.

2. The Nevus Science Group had some answers. The literature we brought forward was not discounted, but embraced. Evan's case grabbed their attention, and they advised slowing down and getting the CGH testing done to find out what the mass is/was. PS it can be done on older fixed tissue, not just live tissue as we had been lead to believe. (The article in question presents a process for determining whether a growth in a GCN is either a benign nodule or malignant melanoma at the only differential level, the genetic level)

3. Statistcally speaking, in an amusing misapplication of math, If Evan had a dollar for every likelihood that he would not have his 2 conditions (MM and GCN) he would have $1,500,000,000,000 or slightly less than the US national debt. The risk being ~1 : 1.5 trillion!!!

4. The geneticist at UCSF confirmed that the CGH testing can be done from fixed tissue (already taken out). It takes 4-6 weeks. It can 100% confirm MM, or 85% R.O. MM.

5. The compassion, support, caring and love we felt in Houston was amazing. There are no quick answers to Evan's situation, and the rush to do something needed to give way to a slower more methodical and 21st century approach. It was given in a 19th century soothing bedside manner. We saw 3 specialists in 5 hours. Our question, "Do we have 8 weeks to get the CGH testing, or do we need to operate NOW because this has life and death implications in that time?" The answers: Oncology - take the time; Dermatology - take the time; Surgery - take the time, but if I see something that needs immediate attention, I'll tell you immediately.

In the coming days we will expand on each of the previous items, but for now you know the gist. In the meantime, we'll leave you with the advice of Matt Luke, a retired MLB player who has a nevus on his face. Survival and thriving in the world is based on a 4 level life. One level is family that loves you, encourages you and shares this with you every day. An second level is a close group of friends who accept you for who you are, or who you are not. The third level is finding the thing you are most gifted or talented and accept this calling with a passion. But the most important is the base level found in one's faith. While we hope that you have each found your faith base, we know that you are part of our extended famly lifting us up in thought, word and prayer.

Thank you

4th of July - Evan Independence Day

Today we're off to Texas, where ev'rythang's . . . We'll let you fill in the blanks. We just wanted to leave you with some of the fun of the past weekend. North Carolina Symphony & the city of Garner fireworks; and the Carolina Mudcats game and fireworks. Thank you Cindy Elliot for helping us capture the moments.

Evan & Mom

Small Group at the Shrine of the Bat

The Three Amigos: William, Evan & Andy

Two of Evan's youngest and most ardent admirers, Tommy and Megan Elliot before they took the field for between inning antics as trainees of the Muddie, the Mudcats's mascot.

If you have images of Evan and would like to share them, please drop an e-mail to Paul @e-colemans.com Thank you for all your prayers.