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 firstname.lastname@example.org. 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 email@example.com