Saturday, November 14, 2015

Nous sommes tous les parisiens

To say that I begin this message with a heavy heart does not fully capture the moment.  It could be said that I always write with a heavy heart or with a sense of being oppressed by emotional, spiritual and intellectual burdens not of my own making.  Yesterday marked a new low in the story of humanity.  And yet it also marked a new high.  Yesterday a group of organized terrorists executed a series of attacks in Paris that left many people dead, more people asking serious questions, and the remainder of us with a little more to worry about.  And yesterday some child was born who will lead a nation, and another who will discover a cure to a previously incurable disease, and someone else began a career in healing with their first patient contact. And somewhere in the world yesterday a child was born with a Large Congenital Melanocytic Nevus (LCMN), and that child’s parents are just like you and I. 

These parents (maybe for the first time, maybe for the third fourth or fifth time) suddenly find themselves in a strange new world. Who is this child? What is a Nevus? Will it kill them? Can they grow up to be normal productive members of the community? Will they be allowed to grow up and become normal productive members of the community? Do you remember those feelings of inadequacy? The fear of failure, death and the piercing gaze of strangers?  There is a word for these emotions and initial understanding—Isolation.  It is the goal of all terrorists—to detach individuals from a group making them more vulnerable or to impress societal mandates upon a group creating individual panic and defensiveness.

The Societal and Political implications are irrelevant, frivolous and superficial.  All power is found in the love for one another and in the strength of relationships which are often forged in the crucible of common challenge or even suffering. All I have to do to see the truth in this statement is to observe the two strong factions within the Nevus community: those for and against nevus removal.  At extreme ends of the spectrum on this issue are people who are convinced beyond a shadow of a doubt that their position is right, unassailable and should be impressed upon the community of nevus owners.  That decision is a profoundly personal decision and can never be taken lightly given the very real risks of surgery and the unknown risks of a fatal outcome if not removed.

But all of that discussion is of no benefit, no comfort nor of any help to those families either facing a terminal diagnosis for their child or are seeking to learn to live again after they have lost a child to a disease associated with LCMN.  We engage in a vibrant community of support and encouragement and for the most part we have learned to live together in the light of LCMN without pointing out the perceived failures of decisions we did not make nor have to live with.  What I mean to say is that Nevus Outreach (NOI) has afforded us a forum to share, live and love as a community and rescued us from the terror of isolation. 

I would like to offer an assessment of accomplishments of Nevus Outreach in comparison to the timeline of the disease process we all most fear for our children: Melanoma.  Melanoma has been found in Peruvian mummies dated ~2,500 years ago. Melanoma as a cancer was not described until 1787 and not identified as metastatic until 1968, almost 50 years ago.  In comparison, LCMN were first described in 1777. A melanoma in an LCMN was written up in 1964 while Nevus Outreach wasn’t even founded until 1997 less than 20 years ago.

In less than 20 years NOI has founded, fostered, nurtured, cajoled and refereed us into a loose confederation of the people whose true strength is in our ability to truly uplift each other as we face both the disease and societies that may not understand, or may even be cruel or vindictive.  Let me share a story to illustrate.

When Evan, my nevus owning son, through a tantrum in a restaurant while we were travelling on vacation I picked him up and took him outside to cool off. He was about three years old and the threat of removal from the family at mealtimes got his attention every time.  I stood at the entrance looking out over a beautiful valley of trees and fields as the sun began to set.  In truth as I look back I may have taken Evan outside just to appreciate the beauty of the moment. Just as I am about to head back inside we were approached by a man who engaged us in conversation. He started by saying that he had noticed Evan getting upset and wanted to offer his assistance.  He stated that he was a local exterminator and that the flea bites on Evan’s legs were what was mostly likely causing his difficult behavior. 

I was then left to cool myself, explain as graciously what an LCMN was, and get Evan back in the restaurant before he figured out the total lack of civility in such a brazen assumption.  That of course was beside the inner monologue that, “It doesn’t take fleas to get my child worked up, I am quite capable of that all by myself.”

As soon as we got home I shared the experience via the Yahoo message board, the forum started by NOI.  The laughs, comfort and encouragement I received were priceless.  I have seen similar stories played out on Facebook, and it warms my heart that such an outlet for angst has been afforded while being a true source of encouragement.

Most of our energies are expended in raising our children as best we can, but unfortunately some of us have had to tread a different path.  This alternate path is one of disease, hospitals, treatments and ultimately death.  I stood up in a general forum at a NOI convention in 2008 and stated, “My family is the one you don’t want to be, our some has been diagnosed with melanoma.”  It is no easier to write today than it was to say in 2008 or to hear it or the first time in 2007.  But NOI afforded us opportunities just as they have to you.

This confederacy of parents and nevus owners has forged paths toward research goals, built awareness and provided both first contact support and ongoing support when children have developed either Neurocutaneous Melanosis (NCM) or Melanoma.  A number of initiatives have generated results but may not have received the adulation or awareness as progress in research is often slow and the details tedious and overwhelming.

NOI has helped establish a global network of scientists and doctors with high levels of interest in LCMN.  And from my personal perspective they initiated and maintain a registry of nevus owners which became the source of material and data for an academic paper I wrote as part of my course work as I pursue my Masters in Medical Science to become a Physician’s Assistant.  This is the path I have taken in response to a promise I made my son Evan as he lay in his deathbed at age 13, “That I would help as many people as I could for as long as I could.” 

As I look back on the last year of 70 graduate level credit hours of classroom work, and look forward to the next 12 months of clinical rotations part of me knows that I didn’t have to take this path.  No more than Travis and Cassandra Bailey had to ask for a full autopsy of their son Gavin, or that Tanya Kennedy might pursue the best and brightest minds in her area to join our fight after her precious Christian passed away.  We do what we do because of two reasons: 1. there is a legacy of our children fighting for their last breaths that will haunt us until we take our own last breath. 2. Because we have been afforded to opportunity to stand on the shoulders of giants who have gone before us and given us a solid footing from which to launch our efforts that other may not have to suffer through what we have.

In a recent note I spoke of the Gavin Bailey Tissue Repository in Pittsburgh and mentioned some of the early successes and breakthroughs that have been made in just 2 short years.  Soon I hope to be able to share my findings of my research for they should offer each of you a measure of comfort and hope, but they have not yet been accepted for publication. But I would encourage each you who are reading to solidify your contribution to our cause by either completing a registry form or by updating the data you have previously entered.  That 15 minutes of your time may say another person days, months or years of worry.

As I close this note I offer up prayers of peace, comfort, hope and love to the parents and grandparents of children who were destroyed by the terror of Paris, and I hope that they will find encouragement and hope in their communities as I have found comfort in mine.  Each of you is my neighbors, each of you has a choice to uplift another, and if you are facing the terminal diagnosis of a child with LCMN please take a moment and consider what positive legacy your child may have on the world by acknowledging the gift that is afforded the world through the most caring and complete physical they will ever have. 

For questions on this essay please contact me at  For information on the Parent-2-Parent support group for terminally ill children with LCMN please call or text 919-455-8787.  To inquire about Clinical autopsy gift for the Gavin Bailey Tissue Repository please contact Dr. Miguel Reyes-Mugica via email at  

Tuesday, August 18, 2015

Awake and Ashamed

It’s 5:48 am. I lie awake staring at nothing. I am not tossing or turning. I am lost. I am lost in the memories of three years ago this very minute when the interminable hum and cycling of an oxygen condenser were no longer intermingled with the panting of my son trying to inhale and retain every last molecule of oxygen because his heart had given its last beat unable to meet the demands of life. 

Five hours before, exhausted from the challenges of trying to live life while caring for the dying, I could no longer keep my eyes open. I could not continue to hold my son’s head as he struggled to keep his airway open as big as possible, I could not stay awake to engage in the staccato conversation of the end stage lung disease. For six weeks he had labored against all odds as his oxygen saturation dropped from 98% on room air to 92% on 2 liter of oxygen till on this evening his oxygen saturation was 64% on 4.5 liters of oxygen.

But now it’s 5:48 am and I can’t sleep, I don’t want to sleep, I just want to run away from the memories of shame.  I am half a father, and today cements that fact into my brain in a manner like no other.  One of my two children died before they were close to leaving my home.  This was no car accident, no random excess of booze or drugs or suicide; He died before he was old enough to experience any of those ‘self’ induced endings.  He died of a disease of ignorance.  I did not know the answer, and no medical professional in the world knew the answer, heck only a couple of them had even thought to begin asking the right questions.

13 and a half years earlier I stood gazing at my new born son face down in a neonatal incubator.  He had been born following emergency C-section because his umbilical cord had been wrapped twice around his neck.  Only the presence and skill of the Obstetrician saw the events as they unfurled before our eyes, and all of a sudden I went from caring for my very pregnant laboring wife to being a fool alone in a birthing room with no nurses, doctors or my wife.  I wandered the halls of the hospital aimlessly until I walked into the NICU and asked if my son was there.

Surprisingly he was, the NICU nurse turned and pointed to a little mass of flesh curled up under a heat lamp.  He was small, and he had all four limbs, and a C-section newborn head (too perfect to be true), and his back was covered with a brown, black, blue, red and yellow wildly bumpy and irregular thing that looked like either afterbirth or a poor attempt at a Hobo’s blanket.  I in my paramedic wisdom and not wanting to appear like a complete idiot asked the classic newborn questions:

“What were his APGAR scores?” 6 and 9, good stuff. 

“And what is his O2 Sat?” Oxygen saturation is a good measure of health. 98% on room air.  Good stuff again. Below 94% I would start to be concerned, below 90% and I would be worried and start oxygen supplementation, below 80% and I would have been looking to intubate, so very good stuff.

“And his blood glucose levels?” 48.  Good before a first feeding, have to give the growing body and brain all the sugar we can.

“And I’m not sure of your protocols, but when are you going to wipe him off?” What do you mean that’s him? What are you telling me? Giant Birthmark? You bet I need to see the doctor, because I am such an idiot.

As I look at the clock it’s still 5:48, and Lizy rolls over in bed and asks me what time it is and I tell her.  She sighs the sigh that only the mother of a dead child can release at the moment of remembrance, an echo from the broken heart that emerges from the mouth like the distant moan of wind on a windswept and empty beach where just hours before there was the frolicking and laughter of children playing in sand and surf.

It’s 3:12 am on Black Friday 2012, I am sitting in a kitchen in upstate Tennessee sitting across from a friend, a surrogate son, a big brother of another mother to my children.  He is strong and fit, a multi-tour veteran of the US Army who has been all over the world being the sole medical provider of small groups of fighting men. And he is significantly less drunk than I am.

It has been about three and a half months since Evan died, and we couldn’t face either doing Thanksgiving at home nor with people who would have no idea what we were feeling so we hopped in a car and drove 12 hours to a farmhouse in the middle of nowhere. We walked in the pastures and played with the dogs, and horses; I can’t remember if the goats and chickens were there yet, but it didn’t matter we were in a place of love and respite.

The only thing missing was Evan, and so early on that Friday morning I let go of all pretense and machismo.  With tears streaming down my face I shared with the only person I knew would understand the fact that I had let my son down.  I had failed in my fundamental responsibility as a father, to get their child to the point of beginning his life on his own terms.  The only other person I could imagine with a similar mindset was this Man among men across the farmhouse table.  He had faced the same inner demons, he was an Army Combat Medic; a person tasked with ensuring that his entire team got home alive after each mission.

In my mind I had failed my mission. The debriefing was painful, cathartic and forgotten the next day; buried in the graveyard of ideas and concepts not fully grasped or appreciated until the years of wisdom allow a person to fully put them to rest or come to terms with.  No one knows the pain of a father who has failed to meet his own expectations; and it takes a person of similar understanding to shed light on the unreality of those expectations, and to shine light on the dimness of self-inscribed responsibility for defeat when there were so many other factors in play.

It’s 5:49 am today.  The shame I feel is self-serving and destructive.  What I now grasp is that I was ignorant. I lacked the knowledge to make the critical decisions.  In some cases the information was withheld from me (Medical Ethics conundrum Beneficence vs, Autonomy while Justice is ignored), in others ways the information did not exist in a usable form for decisions to be rendered in the full light.  It felt like the dawn right now.  We are socked in by clouds in the North Carolina Mountains having run away from the pain of home on this day.

I am no different than many fathers who have lost their children to rare diseases.  That my processing of my grief takes the form of writing and sharing makes me no better nor worse than any of them but it has given me critical insights on the grieving process and the shame that often accompanies a father’s thoughts.  But now my strengths should be more fully expressed in the realm of academic knowledge to shed a little light on our ignorance.

While I finish up work on a couple of papers I wanted to share with you this link to an article I referenced in my last post. If you recall I hinted that new material was and is being developed by an amazing group of individuals in Pittsburgh.  While this is just the abstract it is a taste of what’s coming.  If this work fascinates you or you see the common links between NRAS and BRAF and other cancers then think about lending a hand to the process.  Reach out and contact me, leave a post, take the first step in becoming a member of the Army of Citizen Scientists and see how with your help we might shed more light.

If you are unable to join the fight on the front lines but feel moved to support the fight moving fr
om shame and ignorance to enlightened empathetic knowledge we are working on direct links into the research foundation funding apparatus, please be patient.

The days like this will come and go, each one a marker of time passed or of time passing away.  Evan’s Birthday – February 16, His remembrance day – August 18, Each Father’s and Mother’s day and all the other days that can serve either as unscalable  obstacle or like a riding crop to a thoroughbred’s flank. Be it a birthday, Christmas or the 4th of July the memories can either inhibit progress toward lasting legacy or be a terminal point of sorrowful reflection.

Everyone who knew Evan personally and all those who have come to know him vicariously through others will know that the weakness of today is just that; he would want us to rejoice in his life, love and faith.  His passion was knowledge, information, light and fun.  And so those principles are worthy pursuits for us all.

So from this dim, dreary and humid locale I implore you to find a little sunshine today and share it with all who you meet.  With Love, Light and Laughter we wish you the best of days from Blowing Rock, North Carolina to wherever you are in the world as you read this.


Tuesday, July 7, 2015

Gavin brings Hope

The death of a child wrings you out like a chamois at a high school carwash on a Saturday morning in July.  You are left damp, wrinkled, dirty and without a semblance of love discarded on a line to be dried crispier than a tortilla chip in Texas. 
You are left with a hollow heart, a little more jaded and perhaps an increasingly cynical view of what’s still remains.  Time does not heal all wounds.  But it does give a chance for seeds to sprout, rain to fall and every once in a while some sunshine to break through the clouds of heartache. 
Three years ago I stopped writing for e-nevusnotes, the blog through which I detailed my son’s journey through the last years of his life. The sign off rant was wrong. But to get to this point has been a long, twisted journey that just happened to pop out on a rain soaked garden in Pittsburgh last weekend, the weekend halfway between Father’s Day and the 4th of July.
But before I continue, perhaps a little Donald Trump humor would lighten the moment.  An American, Brazilian, Indian, anda Mexican walked into a café. Now before you get your proverbial tighty whities in a bunched up mess, this is a true story.  It is the story of child heroes, the love of humanity, the compassion for justice and the origin of a real “Captain America”.
Over 30 years ago a doctor in another country happened upon a disease that presented such a conundrum that it wouldn’t let him sleep.  And when he studied this rarest of rare disease processes he was mortified by the deaths of children due to complications. These complications were the things only a parent could fathom, and then it was only in their worst nightmares, and only if it was their child. 
Miguel Reyes-Múgica, MD, is a pathologist, a person committed to understanding the physiology of life from the macroscale to the micro to the biochemical.  His entire life has been about autopsies, not to find out why a patient died, but to allow each patient to tell the story through the most thorough and detailed physical they have ever received.  All this is done so that someone else won’t have to die of the same cause. 
He is our, “Mexican,” he is also a student of Congenital Melanocytic Nevi, and as a student he has always craved having a living library of nevi tissue to examine, study and learn from. Dr. Reyes is the Chief of Pathology at Children’s Hospital of Pittsburgh which is part of The University of Pittsburgh Medical Center (UPMC).  I have personally known him since 2001 when I met him at Snow Mountain Ranch, Colorado, speaking at a Nevus Outreach conference; he was at Yale at that time. This past weekend he invited me to his laboratory which is committed to pigment diseases of the neural crest.
The, “Brazilian,” in our story is Claudia Maria Salgado, MD PhD, originally from Federal University of Goias in Brazil.  She is a pediatrician and has been a student of pigmented disease for many years. She has dual roles in our narrative as she functions in both a clinical role with patients and parents; and as a researcher of nevi tissue.
Dipanjan Basu, PhD, who fulfills the role of the, “Indian,” in my story. Dipanjan aka ‘Deep’ is a microbiologist whose love of his laboratory is only rivalled by the love of his children and wife who see him intermittently as he delves into the cells that represent the ‘enemy’.
For all the medicine and academic prowess of the first three parties the bond I have with the, “American.” is one I wish we didn’t share.  Travis Bailey lost his son Gavin at 17 months of age.  If Gavin is another child hero robbed from his parents by an insidious disease, then Travis is my vision of, ‘Captain America.’  I never saw a cross word come from his mouth and he is always trying to keep the greater good central in his role as son, husband, and father.
In a moment of serendipity, Travis and his family met Miguel and Claudia seven days after Gavin was born. Everyone became fast friends to the point of family.  Time went by with the friendship growing and blossoming in the light of a common goal of living life to the fullest when a child has CMN.
For the overwhelming number of people with CMN there are no repercussions associated with either melanoma or neurocutaneous melanocytosis(NCM), but for a select few the worst case scenarios are visited upon us.  For the Bailey family their world received a devastating blow around the time Gavin turned 6 months old.  The melanocytes visible on his body and invisible in his brain and spinal cord conspired and became a cancerous tumor within his central nervous system.
According to Travis, and confirmed with photographs, Gavin was an electrically engaging child.  The sort of curiosity of life and people that was evident in the near mischievous twinkle in his eyes as he grew towards his child hood.  A childhood that would be cut short because at that six month diagnosis his family was told that his condition was terminal.  There were no cures, there were no medicines, only trials of this drug or that.  There just hadn’t been enough research.
For those of you who knew of Evan or followed his story on this blog, that is an all too familiar story.  So you are left scrambling to try and find some way to save your child.  You will learn the medicine, you will travel the globe, you will spend all your money and much more.  Anything in the world will be done to have a doctor take back the words, “I’m sorry”.
I am sorry. What does that mean?   I was told repeatedly as a child that if you say those words you are promising on your honor that you will never commit such an act ever again.  I know that Doctors, Nurses, PAs are all trying to show compassion. I also know that their intentions are well placed, but with a dying child in your arms these words are cheap, empty and without true intention.  They actually hurt more than, “Well that sucks,” because they convey pity and disconsolation in an attempt to disconnect from an awkward situation.  But as usual, I digress.
Gavin lived his short life to the fullest.  The tumor at one point rendered him paraplegic but a motorized wheelchair allowed him to keep up with his older sister and he would play tag with her and a number of other children from his hometown near, Sommersville, WV, on the big open floor of a local gym.
But cancer is unrelenting. Because there were no answers, his decline was predictable.  For Miguel this was the antithesis of his very being – he would have given anything to have prolonged Gavin’s life. He already had set up a tissue repository at UPMC, a place to study this disease that was robbing the Bailey family of joy while stealing Gavin away from them.  But there wasn’t enough tissue, nor was it alive. There just wasn’t enough time.  It was all just so unfair.
Four months before Gavin passed away, Miguel and Claudia took Travis and his wife aside and talked in more detail about what they did professionally, and how, the Baileys, through Gavin might extend his legacy of smiles by helping get a truer understanding of neural crest fatal disease processes.  They proposed that Gavin’s tissue be the first living tissue in the repository, that if the tumor cells could be kept alive they would offer an invaluable insight into a disease that has never been studied in this manner.
Tired of their pain and seeing an opportunity to truly help others the Baileys consented that Gavin should be autopsied at his death, but that all measures to prolong his life should be exhausted up to that point.  Gavin received radiation therapy in the 2 days prior to his death, and in the hours after he died, Travis carried him in his arms and handed him to Miguel and Claudia in a private moment and private space that was filled with love, grief, profound sadness and a glimmer of potential that someone in the future may be helped. 
Travis told me that only good could come from his actions.  He had reasoned that Gavin wouldn’t need those tissues when he was buried; and he knew Miguel would do all he could to ensure that parents and children of the future would have better options for care and life. No one had done this before, no one had seen the path to doing the right thing, this was a job that only a, “Captain America,” could get done.  And no matter the personal pain suffered to this moment, it was being done for all the right reasons.
And so was born the Gavin Bailey Tissue Repository for Neural Crest Disorders.  But three things were missing: Money, Tissue and Life.  Enter, ‘Deep.’  Dr. Basu began to tend the tissues.  By his own admission he is a lab rat, rarely coming out into the sunshine and never meeting patients or their families.  He just wanted to get to know the, ‘enemy.’  The good cells gone bad were to become his life –  to find them, separate them, to grow them, to study them and to KILL them.
A week last Friday I took the day off and flew to Pittsburgh; Miguel wanted me to see something.  Well to get the whole story correct, Mark Beckwith of Nevus Outreach told Miguel that I should see what he was doing.  So after a long afternoon of travel, I walked into a CafĂ© in Pittsburgh and had dinner with Miguel, Claudia, Dipanjan, Travis along with Tanya Kennedy and Taylor Scott.  Tanya lost her son to this disease nine months ago after he had lived and died a short but valiant battle; and Taylor is the Executive Assistant at Nevus Outreach.
We laughed, we cried, we shared, and we prepared. We prepared to tour the UPMC Children’s Hospital specifically the clinical laboratory and then the research laboratory and finally the tissue repository.  We were also scheduled to hear from a doctor about end of life issues related to children.
Saturday was quite possibly the hardest day I have been through in the past 24 months.  The first 12 months after Evan died were a blur of tears, anger, frustration and an overwhelming sense of failure.  That this weekend was a week removed from one of my personally most difficult days, Father’s Day, seemed almost fatalistically cruel.
The Diagnostic Lab was fascinating and I would be lying if I said I wasn’t paying slightly more attention at this juncture because I had a Lab Medicine Exam on Monday.  As we crossed the literal bridge from the clinical hospital to the research labs the group got noticeably quieter and a little more subdued.  I suppose the researchers were anxious that their work would be appreciated, and the parents perhaps being overwhelmed.
When we reached the Rangos Research Center which houses the research labs, we were privileged to receive a fantastic guest presentation by Dr. Scott Maurer about the clinician’s side of end of life processes. Then things got surreal.  If Dipanjan had been quiet and reserved at dinner he was active and engaging, a ball of electric energy as he showed us this and that.  His work obviously brings him tremendous joy and the opportunity to share this with lay people who would be fascinated brought a palpable energy to his demeanor, and then the first bombshell hit.
“These are Gavin’s living tumor cells,” he shared with reverence as he brought a specimen jar into focus on a video monitor attached to his microscope.  There they were in two dimensional imagery.  They had done it.  They had discovered the right conditions and media to allow these cells’ lines to grow and replicate.  They had enough cells to run serial trials to generate research, they had enough success that other institutions were coming to see how they had done it, and other institutions are asking for cell lines so that they might study them.  This was a “WOW!” moment like no other. I will never forget the manner in which Travis crouched down to get a closer look at the screen, there was a moment of slack jawed awe, appreciation and love that only a parent could fathom in that instant.
As we gathered in the conference room preparing to hear some of the details of Dipanjan’s work, Miguel took the time to share his personal history with CMN and why this project was so special.  But Travis, a quiet and reserved man by nature shared his appreciation with a gentle smile and a wrinkle at the corner of his eyes as the story of Gavin was told.  Miguel called us brave and courageous, even as we feel anything but those things.  He spoke of other parents 50 years ago who made similar contributions to research so that there are now cures for many childhood leukemias.
When Dipanjan took the floor we didn’t know that he had been preparing for over 6 weeks for our visit. There are interpersonal skillsets that clinicians hone over years of practice that researchers do not.  One only has to watch an episode or two of the Big Bang Theory to appreciate a caricature of this truth. And then before he began he confessed that dinner the previous night had driven a personal note home to him.  Real people, patients and parents, will forever look to the lab for answers that only non-clinical bench scientists can provide to fundamental questions.
His work is due to be published soon, and I will not steal his thunder here, but it was mind blowing what has been made possible through Gavin.  Not the least was the addition of 126 other patient tissue contributors, 20+ with symptomatic NCM.
Since I left Pittsburgh on that Sunday morning, my head has been spinning.  I went there with trepidation, fear and no small amount of dread.  I left inspired, educated, and encouraged.  Thank you Captain America for your humble courage and pragmatic understanding of what needed to happen.  And thank you Gavin for living your life to the fullest and leaving a living legacy that may yield curative results in my lifetime.  

If any of this sounds in even the remotest part worthy or honorable please feel free to contact me at regarding how to contact Dr. Reyes at UPMC regarding tissue or monetary donation.  As for the Life part of Gavin Bailey Tissue Repository: A Mexican, Brazilian and an Indian walk into a lab every day and give their hearts and souls that life will be long and joyful for CMN children of the future.
Travis and Gavin Bailey

Saturday, December 22, 2012

Moving Forward

I will never do justice to the memory of my son, nor replicate the emotions or events that have been encompassed in the posts to date.  That said, I have begun a new blog that is part of my ongoing process of trying to come to terms with the loss of such am amazing spirit with whom we were charged to watch over for the past 13 years.

You can reach it by going to Observations

We thank you for coming here and taking the time to feel some of the emotions associated with dealing with a chronic fatal disease in a child, and we pray that you will never have to experience this yourself.

Thursday, August 23, 2012

A Year of Firsts

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

This is not the end. It is also not the beginning. It can at best be described at half-time. For those who follow Evan and his story through this portal, there is no small amount of voyeuristic horror, fear and revulsion of a story that holds only one central theme of the pain and suffering of a child become man and now a memory to those left behind. Evan’s story has at times reached out and grabbed readers by their throats and shaken them from the calm reverie of their lives.

There can be no apologies for those words and the emotions that conveyed a tale that so long as it was being written was in itself confirmation that it was not happening to the typical reader. For those who read with intimate knowledge of the agonies of this journey a large debt of sorrow and regret is extended for the pain and memories that Evan’s story may have dredged up.

At 5:45 am on Saturday, August 18, 2012 Evan MacGilvary Jenkins Coleman breathed his last breath. The details of that moment are so intense, personal and overwhelming that they will not be recounted here. What can be shared is that the previous day Evan had begun to decompensate (A medical term indicating that his body was no longer able to maintain the necessary balances required for his life to continue) As the evening approached he fought to find a position of comfort that ended with him doubled over in his bean bag while watching ‘Pirates of the Caribbean’ by way of a mirror on his knee.

As the evening wore on it was clear that he was going to be unable to sleep and the only thing any of his medications was accomplishing was to take the mental edge off the distress of breathing 80 times a minute, unable to cough, heart rate over 160 and a steadily decreasing oxygen saturation level. And as Evan came to an understanding that his fight would soon end, he leaned back into the arms of his mother and allowed her to cool his brow. The five plus hours of this physical ordeal is akin to running over two marathons.

Fighting to the end he continued to sip water through a straw and at 4:45 even asked for a medium Coke. At around 5:30 his final words to his parents were, “I love you.” As the fight and life left his body fifteen minutes later, a calm serene peace descended on his body and he breathed his last. No one will ever be able to say that he did not fight the good fight far longer than any other we have known. Many medical providers have commented along Evan’s journey that his lack of complaining put many adults to shame and set a high standard and wonderful example for his fellow patients.

And so began the Year of Firsts. There was no fanfare of Angels trumpets; there was near silence due to the absence of ragged breathing and an oxygen concentration machine turned off. For those who with the morbid fascination of an entranced audience who have been watching and praying for a different outcome, the moment of collision is but the beginning of the dissipation of energy that had been brought into the impact equation. (Impact equations are a fundamental topic of Physics: The Law of the Conservation of Energy states that energy cannot be created or destroyed only transformed. All the energy going into the initiation of an event must be accounted for at the conclusion of the event.)

The external image of a slow motion train wreck serves the purpose of creating a picture of an unstoppable event resulting in cataclysmic damage that resolves itself not in the moment of impact but through the derailment of cars, collisions with unmoving adjacent objects and structures and general chaos and mayhem. If this verbal description has not grabbed your imagination, please consider watching the beginning of the Steven Spielberg movie “Super 8”.

The internal image for those closest to the event the image is that of a nuclear bomb disposal unit that has suddenly realized its failure as the white hot searing light of nuclear detonation announces the unit’s failure to contain and render the problem inert. The resulting crater lies across all life paths of the unit’s members and the crystallized glassy debris is left behind to explode on contact or cooling at unannounced times and circumstances that leave the impression that one is walking in a minefield where every step, every turn, every attempt at avoidance merely sets off another explosion of a glassy radioactive mine.

The hole left behind is an immense crater of unexploded ordinance that reveals itself in sudden overwhelming waves of intense painful sadness. There is no way to cross this hole quickly without imminent self-destruction, as every turn reveals a trip wire of a memory that explodes into an instant full realization that there will be no more trips to McDonalds for snacks or trips out to relieve anxiety. There will be no more need for Evan’s laundry to be done, or finding out that the last load in the dryer was his. The discovery of a casually discarded jacket over the backseat of the car is enough to initiate total meltdown.

Let there be a necessary intervention of tangential information. Evan is in a better place – whether your belief system runs toward Heaven as does ours, or you are agnostic or atheist, there is no denying that he is no longer suffering the agonies of suffocating to death as a disease process robbed him of the ability to exchange oxygen and carbon dioxide in his lungs. Therefore this writing and the services of this weekend serve a singular purpose of providing those who mourn Evan’s loss a place to jump back into life as we begin the process of coming to terms with our loss.

The metaphorical reference now returns to the smoking radioactive crater that lies in front of all paths of future travel. A look behind shows that the last five years have been littered with wonderful memories through a wasteland of the battles fought, some won some lost, in a war that seems to have been forfeit to an enemy known only as cancer. And as we look at this hole in the ground pockmarked with mines and triggers a salt rain of tears falls in an almost continuous downpour. There is a fear that the sun will never shine again, and any laughter is forced, inappropriate and cut short. Life seems both very wet and very over because we cannot step into the hole. The hole is deep, treacherous and functionally impassable. We are stuck.

As we peer into the future we see that the salt water rain will fill the hole, and around us are growing trees and plants that over time will be fashioned into boats for travel across the salt water lake to the other side. The hole will never go away, but it will become passable and a beautiful place of remembrance.

But today the future does not take away the Year of Firsts. Today it was the first time to request a table for 3 instead of 4. Three days ago it was a first visit to a funeral director and tomorrow it will be a first visitation. There has been the return of now unnecessary medical equipment; and then there was the gathering of pictures and things that defined Evan’s life which is not easy for a young man who lived such a rich life in just 13 short years. In the next twelve months among the known Firsts will be birthdays and Christmas, Halloween and Easter; and these can be accounted for, anticipated and supported. What we fear are the unknown Firsts. These are so numerous at the moment due to proximity of people, places, stories and events. But what will we do in 3 months’ time when we get an invitation for Evan to attend some event that he attended so joyfully in the past, or turning up a lost sock, shoe or mitten when cleaning a closet. Those are the times when the black sheet of overwhelming grief will only be lifted by the joyful sharing of the best moments of his life with people such as you.

Final notes: A Memorial Webpage has been set up for Evan, where you can leave memories about Evan, pictures can be posted, and you can read how Evan impacted the lives of so many others. It also contains the details on services and connections to the ongoing Miracle 2012 legacy. It can be reached at This site will remain in place in perpetuity.

Lil’ Duck: Lil’ Duck was born out of a legacy from another victim of cancer and her friends extension of vicarious living through another duck, Squeaky Edgar who travelled the world capturing events, stories and memories that were shared through a public blog so as to maintain an ongoing interaction with the world. And so our Lil’ Duck is a visual representation of the remaining spiritual presence of Evan in our lives. As Lil’ Duck goes with us, he provides a viable cover for those moments that we forget that Evan is not with us as we ask for tables for four instead of three, or we do activities that we know that he loved to do. We do not plan a blog for Lil’ Duck but rather convey the presence of his memory through pictures on facebook in those places that he loved to be. In the past day Lil’ Duck has been spotted in Evan’s Garden, at the Adidas Outlet store where he got his hallmark shoes, and at the Cracker Barrel where he loved to order pecan pancakes.

And so this piece is done, the story will continue and the writings will be given life and venue in so other arena. In parting and in some ways hinting at the future; children no matter how unique should never be used as Guinea Pigs. For all the failures of medicine, morals, and people – guilt and regrets will never change the outcome of events in the past. And while we have traversed some rough days in the near past and have some rougher ones in the next week; we hold onto Peace, Hope, Joy and Love – knowing that the greatest of these has been, is and will continue to be Love.

Monday, August 20, 2012


Evan MacGilvary Jenkins Coleman, age 13 of Raleigh NC was called home to heaven at 5:45 am Saturday August 18, 2012. After a five year battle with malignant melanoma, Evan was held in his mother’s arms as he came to eternal rest.

Evan was born February 16, 1999 in Royal Oak, Michigan (a suburb of Detroit) to Paul and Elizabeth (Lizy) Coleman nee Zimmerman. He was born with a Giant Congenital Nevus that was the origin for his cancer. His elder sister, Morgan, was a schoolmate of his at Our Shepherd Lutheran School in Birmingham, MI until the family moved to Raleigh in 2006. At that time Evan was enrolled at Wake Christian Academy. In the fall of 2006 he accelerated into the third grade, and a little over twelve months later he had his first of 6 surgeries to address the mass that had developed on his left back. He persevered through school until the chemotherapy medications interfered with his traditional school day. As a result he began home schooling in 2010.

Starting as a Tiger Scout in Michigan, he continued Scouting at Holland’s Church and finally settling at Pack 24 in Clayton where he earned his Arrow of Light prior to crossing over to Boy Scouts. Some of his favorite times were camping both with the Scouts and with his family in the parks and woods of Michigan and North Carolina.

A Renaissance Man in a sound bite age; Evan loved music, art, math, animals, building, architecture and computers. In 2009 he won the NCCSA Fine Arts Science Fair project for his construction of a transparent body computer that powered 3 interconnected video monitors. Musically he played trombone, but really loved improvisational piano. He leaves behind a dog, 2 dwarf hamsters and over 30 fish.

A long standing LEGO builder, he vacationed in Legoland California as part of a Kids Wish Network trip in between a first round of chemotherapies in 2008. His love of life, courage, perseverance and grace under pressure inspired everyone from professional soccer players to the more than 100 volunteers who worked on creating the first half of Evan’s Garden – a place of peace and reflection. It is also the site of his first full scale building from his designs.

Some of his deepest frustrations arose from an intolerance of stupidity, lying, selfishness and whining. His outlets for these situations revolved around his artistic expression and first person gaming. Among his greatest disappointments was when people gave up on him because they gave up on their ability to help him. The eternal optimist he continued to research his condition within a week of his passing, and he constantly challenged his parents to see the brightness of his hope during the most difficult of struggles.

His name means ‘Little Fighter’ in Welsh, but he is remembered for the big fight he gave to his arch nemesis Melanoma. His journey of 6 different surgeries and 4 different rounds of chemotherapy were an ongoing testament to his will to live. In the end, as his ravaged body bore the brunt of the disease, he lay back in his mother’s arms as she cooled his forehead and let his father massage his feet as they sang songs of peace and love, prayed and read scripture. He passed into the peace he so richly deserved at 5:45 am. as his pain, anxiety, discomfort and torment were ended.

Evan is survived by his parents, Paul and Lizy, his sister Morgan, Grand Father Rev. Paton Zimmerman who lives with the family. He is also survived by his paternal grand parents, Margot and Bernard Coleman of Asheville, NC; And extended family from Michigan, Pennsylvania, Georgia and England.

Visitation will be August 24, 2012 from 5-8 pm at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520. The church can be reached at 919-553-4784.

A Celebration of Life Service will be held at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520 at 11 am. Holy Cross Pastor William Beyer will lead the service and Evan’s Grand Father Rev. Paton Zimmerman will deliver the sermon. Scouts in attendance will serve as ushers.

Arrangements are being handled by Cremation Society of the Carolinas, 2205 East Millbrook Road, Raleigh, NC 27604.

Evan’s Fund was established in conjunction with Miracle 2012. ( These efforts have resulted in the establishment of Evan’s Garden and a concerted effort to eliminate Evan’s medical debt. Going forward the focus of these efforts will revolve around establishing a research protocol to attack the cancer Evan suffered from and to reach out and fund those organizations that both helped and inspired Evan including The Children’s Inn at NIH, Nevus Outreach, Inc., the LEGO Foundation, and others.

Thank you to all the people who have been a support to us.

Life is like a Road

Life is like a road,

The road is often not straight,

or clear,

and sometimes the road splits,

and we must choose what direction to go.

Sometimes we can walk this road with friends,

other times we must walk alone.

But when you get to the end of the road,

and all is said and done,

nothing really matters anymore,

except for the journey,

and the love you've shared and received during it,

and the fact that this love will stand the test of time,

and go on forever.

-Evan Coleman

July 30, 2012

Wednesday, August 1, 2012

A Brief History of Wilmington NC – Evan’s perspective

This morning Evan woke up in Wilmington, NC at around 8:30 am and with that act a day of equally intense and juxtaposed emotions was begun. In the last 8 hours we experienced heavy concern, deep soul defining sadness, sweet uplifting joy, profound gratitude and humility, and then full circle to heavy concern tinged with hope. But as with all things these last six weeks nothing is realized without a firm foundation.

In this situation, the foundation laid was actually the big events of the past weekend: The Concert, and the Grand Opening of Evan’s Garden. With no reservations or qualifications, nor cynicism or sarcasm; both events were roaring successes. They of course could never have been realized without the overwhelming generosity of time, talents and gifts of friends and family. To try and frame the support; there were over 100 volunteers who participated in preparing a blank grass canvas into a warm and colorful place of peace and tranquility that is Evan’s Garden; On Saturday, over 30 volunteers, 4 gifted music groups (Erin Nenni, When Forever Comes, Scott Barton with his Vocal Flava, and The Josh Pepper Band), a talented Stage Manager, an amazing MC, and a gifted Director put on a near flawless highly professional event.

Evan kept his distance as he is want to do at the moment, but listened, watched and observed all the people and activities, all while tracking down technical support issues on Saturday, and designing the next element in his namesake garden on Sunday. That said, the intense level of activity took its toll and Monday was very much a crash and burn day that had his parents on their knees more than once seeking one more hour, minute or second of time.

By midafternoon Tuesday the emotional and physical effects of the weekend had worn off to a great extent and Evan coming out of the woods after battling an infection for the past 5 days perked up enough to say that he wanted to ‘go out’. These words are buzz words for his need to leave the place he feels will be his Waterloo. A decision was made to go to the beach, a final family beach vacation, the destination: Wrightsville Beach just outside Wilmington, NC. 2 hours away, Hotwire for hotel, and we were loaded in two cars (Evan travels with wheelchair, portable oxygen concentrator, 2 tanks of oxygen, pillow and 4 blankets, computer backpack) and on our way.

Wilmington has a special place in our hearts as it was one of the first places visited in North Carolina 10 years ago. Evan spent July 4, 2002 watching the Wilmington/Wrightsville Beach Fireworks from the deck of a beach house on Topsail Island just up the coast. 3 years later he did his North Carolina City project on Wilmington, did you know that Walt Disney World could fit the entire City of Wilmington in its boundaries? In 5th grade he travelled to Wilmington Christian School with his own designed and built computer to win the State Science Fair. Since that time a visit a year to Wilmington with a requisite stop at the Trolley Stop hot dog restaurant became family tradition. Except we hadn’t been this year, but there was an itching in the pants and a searching for the chance.

Last night as we pulled into the hotel there was a heavy overcast and the streets were lively but dark. A late night food run came back wet but victorious and a midnight breakfast of chocolate chip waffles with syrup, bacon and eggs was hungrily devoured by a famished Evan. This would be a good time to note that it had been determined several weeks ago that the radiation therapy had sufficiently disabled (please read destroyed, crushed, liquidated or your own vernacular for severely damaged) the main tumors that there was no significant energy depletion from them; so that Evan’s weight loss was now only due to his own appetite. Enter Prednisone to reduce lung tissue swelling and its desirable side effect of appetite enhancer.

The sun rose at about 6:30 am this morning, but was nowhere in sight as the rain pelted down and wracked window and pavement alike, lightening sparkled and the wind whistled and howled around flagpole, lines and corners. There had been no family beach time last night and it looked doubtful at best this morning. When Evan woke up his eyes told a story of anxiety. This was not home, this was not familiar, this was not good. Effectively his trip came to an end when he took the medications necessary to calm him down.

After driving around Wilmington a la the late night drives to lull him to sleep when he was a baby, we gathered up our belongings and in the pouring rain left Wilmington behind Evan. During these remaining months with Evan there are diametrically opposed strands of thought that beg for attention: First is the strand that wants to secure memories by doing those things and going those places that will be indelibly etched upon the surfaces of all our minds never to be washed away; the second is the strand that never wants to know when the last time you’ll visit a memory place with Evan.

And so as the rain poured over the car, tears streamed down a face knowing that this was the last time Evan would be in a place so near and dear to his heart. Truly this treasured place of memories will never be the same in the future. A walk on the beach will bring back memories of carrying a little boy from surf to shower so as to reduce the pain of chafing sand inside a skin tight body suit. Or a calabash meal on the inland coastal waterway will conjure memories of family friends and a little boy with a boyish grin and quick wit. Even the wind whistling through the dune grass will draw out memories of children’s laughter echoing as they run through the hot sand to the waiting surf; prominent among them a boy dressed in royal blue from his head to his ankles. Yes, August 1, 2012 will mark the last day Evan was in Wilmington, but will also be a day that Wilmington will live in us.

An hour later as we traveled the flat ribbon of road that is I-40 in the coastal plain, the sun broke through the clouds and shone warmth and light on everything including Evan sleeping in the back of a cruising car. The warmth of the sun was as uplifting as the rain had been depressing and was a reminder that comfort follows heartache even if some time and distance must be traveled before it is realized.

Tears gave way to somber comforting joy. Comforting joy gave way for the humbling of being informed of a generosity beyond the means of most mortals. Our family, friends and none too few strangers who have become friends were able to help us raise slightly less than half our goal for Saturday night. This is not to be sneezed or sneered at, on the contrary it is something to be overjoyed about for we know the challenges of a down economy, many people gave to Evan to the point of hurting. We knew this and appreciated every last penny for it represented the best that people could do. As the evening wound to a close we also knew that the generosity of the players, teams, management and league office of the NASL had come together to allow accumulated funds to be 2/3 of the goal for Saturday.

When Lizy first began working for the Carolina RailHawks as the Head Athletic Trainer, she also became an employee of Selby and Brian Wellman the then owners of the team. It was a relationship at a distance, but the Wellman’s had a place in their hearts for Evan, for what he represented and for how he conducted himself. Being the owner of a minor league sports team is not an easy thing to do, and friends are few and far between just from the sheer logistics and influence that can be unseemly and destructive to team goals. That said, the Wellman’s went out of their way to give back to the community in so many big and little ways.

It can also be said that they never forget to take care of their own. Almost two years after turning ownership over to another entity, the Wellman’s did not lose sight of the importance of maintaining relationships, supporting the underdog and reaching out with a helping hand. With by far the largest single donation toward Miracle 2012: The Concert Selby Wellman donated a sum equal to the shortage of the nights goal and a little more. Humility is to know that some gifts when given are too great to be repaid, that the only appropriate response is gracious and thankful acceptance.

And so we stand humbled before our old friends, family, new friends, business partners and former employers; with a bowed head and grateful heart we acknowledge that we are not worthy of such divinely inspired gifts but we will accept them and use them wisely.

Exhaustion is now settling in on the rest of the family, and tomorrow we will once again seek to be revitalized by working on Evan’s Garden. If you would like to experience some peace and revitalization we invite you to come on by and we’ll put you to good use. To borrow the saying of a friend; “We started from dirt, and we’re gonna go back to dirt. We might as well get familiar with it in the middle”

Many peace and blessings to y’all. If we don’t see you in the garden, perhaps you’ll stop by to hear The Regulars as they Jam for Miracle 2012 on Saturday, Sept. 22 at 7:00 pm at the Big Easy in Cary.