Monday, December 31, 2007


Thanks be to God! If ever there was going to be a positive end to this rollercoaster year it would have to be this way.
Today Evan had a 5 hour ordeal for getting the ‘urgent’ PET/CT scan after the conforming diagnosis of malignant melanoma. Following a failed IV start, the good Samaritan nurses from the slow pediatrics department came and got things going. FDG radioactive sugar was put in his blood stream, and radio-opaque dies were ingested. 45 minutes later, a 15 minute procedure is started, completed and we were sent home at 2:00 pm. We leave with little hope of any news before Thursday at the earliest.
However, Attending Radiologists stayed late, and one particular Pediatric Oncologist Resident stayed later. Scans were read, additional research was conducted, and phone calls were made.
At 7:00 pm, Dr. Griener called with this news: As of December 31, 2007 there were no readily observable metastatic lesions. As of December 31, 2007 there was no abnormal ‘FDG’ uptake even at the original excision site.
What happens next? God knows! But we will celebrate a new beginning this evening with the four elements most closely associated with this season: LOVE, PEACE, HOPE and this evening a greater sense of JOY.

Sunday, December 30, 2007

Cancer Confirmed

Plausible Deniability has been removed from the equation. It is now confirmed, 4 out of 4 doctors concur that part of the mass removed from Evan’s back was indeed malignant melanoma. From Sloan Kettering to MD Anderson, from Henry Ford to Duke we have a confirmed diagnosis. Perhaps we have all been given this brief window of time, from first utterance to confirmation, as a way of preparation, the calm before the proverbial storm. And a storm is truly brewing.
Doctors from across the country have been discussing what the next steps should be, and they have decided that a scan is in order; and the sooner the better. So this afternoon at 2:00 p.m. we were notified that Evan was to be receiving a PET/CT scan at Duke on Monday morning. History will be the judge of our preparations and priorities as parents and patient, but we’re very glad to have made the acquaintance of Dr. Griener and Dr. Wechsler of the Duke Pediatric Oncology Group prior to getting the call this afternoon. Evan is very excited that he will be getting this first scan. Not thrilled about the I.V., but glad to be moving the process forward.
The purpose of this scan is to determine if there are any ‘hot’ spots of unusually active blood flow. Given the recent surgery the original excision site is likely to be ‘hot’, which raises concerns given the treatment options. Any other ‘hot’ spot is cause for additional concern as it is a potential indicator of metastasis. We have been informed that the next course of action/observation is already a topic of discussions with widely varying opinions amongst the various doctors.
Medicine is an art which is practiced on patients. Most times the doctor is familiar with the malady and the treatments are well known and accepted, or the malady is subject only to known palliative or maintenance measures that ultimately define a quality of life. What then for the patient that defies access to the ‘known’? What then happens to the familiarity of choices? How does one develop an informed consent? When the internet and relationships render the patient as knowledgeable in the areas of diagnosis, observation and treatment, what is the role of the physician? Is it to strut the ego? Is it to tout the academic achievements? Is it to put the patient fully in the aura of the all powerful, all knowing, all caring ‘Doctor’?
In the information age, knowledge is power, in medicine it is the power to make an informed decision, to be an active participant in discussions, to have one’s opinions heard without having to have been subject to the sycophantic process of medical school, internship and residency. The withholding of information, the exclusion from the debate process, the last minute decision making and scheduling is not just wrong, it borders on . . .
Now that the parents have shared their personal angst, anger, grief and frustration; we’ll get back once again to the main protagonist of our book. When we last left him, Evan was eagerly awaiting his role in the Christmas pageant and the arrival of a heavy sleigh, a fat man in red, and LEGOs.
Evan was one of the wise men in our children’s rendition of the birth of Jesus as shared by Matthew. Mom co-directed, Dad ran sound and lights, Morgan narrated, and Evan did his king thing. Everyone had a great time, and they only stayed up till 11 after all the sugar of the post production nosh.
Christmas Eve is Morgan’s birthday, and she treated us all to “National Treasure: Book of Secrets” and she and Evan have memorized half the script in one sitting. Mr. Evan took the opportunity this year to try to stay up and see Santa, unfortunately for him, he fell asleep at around 11:20 p.m., only to wake up at 4:00 a.m. and realize he’d missed the Jolly Old Fellow. While staying up late might put him on the ‘naughty’ list for 2008, Santa obviously had Evan in the ‘nice’ list in 2007 because there it was: the LEGO to beat all LEGOs, the Mars Mission Eagle Base. While there are undoubtedly colonialist and xenophobic overtones to this newest LEGO theme, it is the pneumatic transfer tubes and Alien characters that really get the imagination juices flowing. Evan has managed to convince us that playing Astronauts vs. Aliens is a great family activity, and has had all four of us and Snoopy playing LEGOs on the bedroom floor. What a blast!
Will write again when we can, this was meant to alleviate some of the burden of sharing the details with others, and while it is likely to be cathartic, there is some doubt over whether this is healthy or beneficial to the cause.

Friday, December 14, 2007

Today's the day - for new friends, old friends and a new activity

Today was a day for introductions. Today was a day for confirmation of the unique (or extremely rare, depending on semantics). Today was a continuation of the waiting game. Today we got a look at life in a community we don’t want to join; and began the process of acclimating ourselves to the potential of that possibility.
Today, we have added some new doctors to our team. Dr. Wechsler is the Chief of Pediatric Oncology at Duke; and Dr. Pappo is the Chair of the Children’s Oncology Group (COG) Committee on Rare Tumors. COG is the research arm for the National Institute of Health and the National Childhood Cancer Foundation. Dr. Pappo is located in Dallas, TX and was previously at St. Jude’s in Memphis. We have also reconnected with support through a group called Nevus Outreach, and they have been very helpful.
Dr. Wechsler leans heavily on the side of a conservative approach to Evan’s situation which is a true God send for all concerned. As detailed below, Childhood melanoma is a rare condition and requires close management, childhood melanomas arising from GCMN are unique, and so the word went out through COG and the brightest minds in the field are formulating best monitoring modalities and treatment protocols. All monitoring will be based on the Hippocratic theory, ‘First, do no harm’ which renders many invasive procedures off limits. The ideal choice would be a PET/CT scan which would reveal obvious hot spots around the excision site due to increased blood flow during the healing process. It might also create a wild goose chase or an opening of Pandora’s Box. And so we continue to wait.
Being unique, a one of a kind, a collector’s object is very valuable in many circles. Under these circumstances it could be seen as problematic in a good light, downright exasperating in poor light. Evan’s condition is considered rare by those who do not like to deal in absolutes, but we have yet to find a doctor who can refer us to another similar patient. COG has a wonderful website that shares some wonderful information on cancer, its incidence, prevalence, treatment, outcomes and survival rates. 450 children <20 years will be diagnosed melanoma in the US this year. 60,000 adults will be diagnosed with melanoma. Even using the higher incidence of melanoma within the GCMN community, the number of children with GCMN and melanoma in Evan’s age group is approaching 1. This means that there are no current studies or trials related to him or his condition. All treatment options other than further excision or surgeries will fall into the experimental/off label/off trial. And the reality of many of the treatment options is that they will carry a heavy price up to and including . . . Waiting is a character builder, it develops patience and discipline . . . this sounds like lecture 45 from our childhood. What it does is bring frustration, anxiety, anger, and ultimately it brings humility and peace. This is not our PLAN, this is not our place to manage a situation, and we are parts of an earthly team. A team assembled to do battle on a microscopic level with cells that are intent interfering with the life dreams and goals of boy who is as unique as the condition he carries. This team has been gifted with the brightest minds in the respective fields: Dermatology, Surgery, Pathology and Oncology. And we thank God for its assembly. A team that we know is being held up in prayer around the world. We continue to carry a hope in the plausible deniability of Evan’s clinical presentation, a rambunctious handful of playful 8 year old that has carried the initial tumor on his back since birth. The second opinion on the original expert opinion has not been developed as this is written. We were told that it would be sometime this week that we would hear about the pathology report from Dr. Kamino at NYU. You might be surprised to hear us say that this delay is good news; but she has had the slides for a longer time, and has asked to do more slides with different stains. As she is the pathologist responsible for the maintenance of the only Nevus Registry in the US, her delay indicates a level of controversy moving in a different direction likely away from treatment towards observation which is our obvious hope. Should there be any developments we will post them here in short order.

While we waited for Dr. Wechsler we were exposed to the loving community of familes, children and care providers that gather each day at the Duke Pediatric Oncology clinic. We took heart in the close knit processes and openess, and we found it all too easy to take a step backward to move away from the environment. Please hold us close to your hearts as we each struggle with a reality we are not prepared to embrace. While we are at our weakest, please pray for our strength.
Now that we’ve covered all the personnel, medical issues and primary sources of parental angst we shall return to the hero of our story, Evan and his ongoing life of excitement. This week saw the rough draft of the Science Fair 2008 entry prepared, delivered and presented. The project is the comparison of Incandescent, Fluorescent and LED light sources. Evan is evaluating power sources, power usage, light generated and cost in an effort to confirm his hypothesis that LED’s as a light source is in the best interests of us all. He built a box, put in a couple of light fixtures and some LED’s, wired the AC side, soldered the DC connections, and did the math for the report that is the backbone of his theory. Next up a visit to a local company that is a worldwide leader in commercial LED usage. He would like to extend many thanks to the Heather at the Clayton Radio Shack, and the both Tom Powers (Jr. & Sr.) at Powers Signs in Danville VA for their help in procuring the supplies.
After this morning’s trip to Duke, Evan was dropped off at school, but his thoughts were on racing. At 5:00 we joined our friends from church, The Gustavsons at Rush Hour Karting in Garner. There we all raced fast karts on an indoor track until a small spin out in turn 7 resulted in first a yellow flag, and then a red flag. Bobby had top speed, followed closely by Corey and Alex. Evan had a blast until the yellow flag but that is for another story. All in all he is loving life and livin’ large. Every passing day is a day closer to Christmas, and while he holds this sacred time close to his heart, the gleam in his eye tells the world that this day might also be call National LEGO Day. And so until next time, we leave our hero, his LEDs, LEGOs and little Mars Men to: playing, sleeping and living the life of an active engaged 8 year old.

Friday, December 7, 2007

Hurry Up! and WAIT!

We have all been told, “No news is Good news.” We beg to disagree, and research into situational ambiguity informs us that people would rather have bad news than no news at all; and so this week has been one of some frustration.
Slides and samples have been requested and sent to NYU where the only nevus registry in the US exists, slides and samples are also being forwarded to Henry Ford Health System, and requests for review and inclusion are also pending at Yale.
While the academic process has moved forward; a treatment/observation team assembly has been a little slower; however, we now have an appointment with the Head of Pediatric Oncology at Duke – Dr. Wechsler, who has co-authored a paper on pediatric melanoma and its treatment from a study at Univ. of Michigan. That study showed great promise. We see him next Friday, 12/14. At that time we should also have the results back from NYU – the second opinion of the second opinion.

Monday and Tuesday saw Evan take out all his Rokenbok and build a two level train track city; complete with sweepers, elevators and general machinery. We’ll try and get pictures, but getting into his room is akin to taking a walk in the jungle, your just not sure what you’re going to step on or into. He spends hours building, running, reengineering and rebuilding. It is a “task focused” intensity where he is able to shut out all distractions and find a real joy in the elements of making something new and each new rendition comes with a complete understanding of all the activities of the people within the imaginary world he has built.

Evan played his trombone in his world concert debut with the 4th grade band on Wednesday, and he/they sounded great. Thursday night he started working on his science fair project by building a display box for his experiments. This weekend we will all be going to Asheville to hear Nana sing with the Asheville Choral Society in their Winter Concert.
Evan would like to say thank you to all who are offering prayers on his behalf, and the notes of encouragement are greatly appreciated. Our challenge as facilitators of this blog is to share news and information without unnecessarily causing anxiety. This is done with Evan knowing the clinical diagnosis, but knowing he holds only a taste of the worldly preconceptions or fears regarding his diagnosis. Nor does he have either a statistical or analogous view of that information because he lives in a statistical group where n=1. So let us keep our minds and thoughts on the present for none of us knows what the future holds, truly God only knows. Evan on escarpment over Lake Nakuru, Kenya - June 2007 - Thank you Poppa!

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.