24 hours ago I had just finished tying my neck tie in preparation to go to a funeral. My need to be distracted from the tragedy of a life cut too short lead me to FB where I read, “Paul just curious where are you getting your patient reported information? When you talk about rates are you talking about ones that are symptomatic or non-symptomatic or a combination of both?”
Both questions need to be answered and I hope I will be able to accomplish that with this blog post. But before I wrote this I had two very important tasks to accomplish. First, I had to attend the funeral and share some thoughts with the family who are upside down with grief; and second, I had to take Lizy out for an evening of fun and laughter with dear friends of ours who knew and loved Evan and mourned his death with us before they had children of their own.
The ironic nature of death is its inevitability once life has begun. As I sat in the church yesterday thinking about what I might say, I was drawn back to the questions on FB. By what right do I speak? By what right do I profess knowledge? And by whose authority do I act? These questions have haunted me for 17 years. I ask those questions of myself every day, I asked them at every opportunity of all the medical providers who ever attended to Evan. But yesterday I just sat and contemplated, knowing that the wrong words or a mishandled delivery would not provide strength, help, or healing.
The woman who had passed away just a week ago was not well known to me. Gathering from the attendance at her memorial service, it seemed that she must have been a very quiet and unassuming person. 25 of her coworkers showed up to share their loss, and perhaps another 40 or so family and friends. But the 4 men and 3 women who sat in the front row knew her best and she had invested time, and love and caring into each of their lives so that each of them (A Husband, two sons, a daughter-in-law and 3 grandchildren) is now a living legacy of who she was in life.
Why was I there? Why did I feel the need to speak and share? Because when we were at our lowest points in the summer of 2012, when we were trying to deny death its victory, when we were planting a garden and trying to sing our way to joy – She helped us. I think that if she could have done her work at the Miracle 2012 (the concert to help defray medical expenses and raise awareness) without any recognition she would have done so; I did not even know that she had been there to help. This is what I knew, every time she saw either Lizy or I she would ask how we were doing. She was the embodiment of quiet compassion without fanfare or the need for recognition. She cared.
6 months ago she had been diagnosed with pancreatic cancer, and a week ago she had died. I attended her memorial service because she cared, and I spoke to her family of her selfless care for me and my family. And I shared with all the people in attendance that for all the good that someone invests in us we are obligated to share their love with others, so that we might be ambassadors for good, carriers of compassion, and living legacies of life.
Three and a half years ago, a woman I barely knew offered her time and help to a chaotic hodgepodge weekend driven by hope but grounded in the reality of a devastating reality – a life was being ended too soon. For as much as we know that life must end, we want to end on our terms, and it should never happen to a child. As a race of creatures it may be evolutionary selection that older creatures will do whatever it takes to keep the young alive, but that view does not account for free will, self-interest or most importantly love.
Her loving sacrifice, along with the sacrifices of so many others, allowed me the opportunity to grieve on my terms, on my time frame, and to rehabilitate at my own pace. Part of that process was determining how I live out the death-bed promise I had made to Evan – That I would do as much as I could with the time left in my life to help as many people as I could.
That lead me to Physicians Assistant school which would afford me the chance to become a medical provider faster than any other route. As it happened the school I am enrolled at was undergoing some changes and a professor offered a possibility of doing an independent research project. This would be on top of the 22 graduate credit hours/semester for 4 straight semesters of the first year, and in addition to the 12 months of clinical study required to graduate.
I met with the professor and was discouraged from moving forward, but I did anyway; and then I met with the professor and their boss and was again discouraged from moving forward, “It’ll be too much to handle”, so I applied for IRB (Institutional Review Board) approval anyway. Along the way I was in contact with Nevus Outreach about the Registry of Nevus owners, and was told by some that it was “messy” and “there may be nothing to work with.”
12 months ago my research proposal received IRB approval 3 months after submission, and soon after a data file arrived from Nevus Outreach. 4 months of work later I had my first breakthrough, only to be shot down for conducting ‘dirty’ science – I proved a negative; the medical assertions that LCMN has a higher risk for melanoma was wrong, but I couldn’t prove what was happening.
I have been told by a wise soul that I must break the narrative for a moment to explain the term ‘dirty’ science. ‘Dirty’ science is good science – a question is formed, then it is tested against data, and conclusions are reached. It is termed ‘dirty’ by academics because it causes all the related ‘knowns’ and ‘givens’ to be questioned leaving the area of research a little muddier than before.
‘Clean’ science clarifies a subject by proving a positive assertion. The impertinence of a student to assert a new positive with no supporting laboratory findings would be seen as fraudulent at worst and looked on with disdain and derision at best. It was essential for credibility that I initially assert the ‘given’ even if I didn’t believe the established medical understanding otherwise my work wouldn’t be given credibility. All I wanted to do was throw the medical understanding of the past 40 years into question long enough that someone would look and find something in the lab that would be the basis for ‘clean’ science.
As a result, I lost my advisor and was floating on a sea of pain and failure until someone threw me a paddle of self-belief and I worked my way to shore. 5 months later I had a finished paper based on a reworked scientific question and submitted my work for publication and peer review.
Two weeks ago I found out that my paper had been accepted for presentation and publication, and since then I have been invited to present my findings at the Graduate Symposium of my school, and possibly to share them in other locations as my academic schedule permits. I hope to be able to present at the Nevus Outreach Conference on my findings, but also to speak to validating the data in the Registry and how parents might contribute in many ways to the research efforts that I hope will lead to interventions and cures that will ensure that no more children die from any sequelae of being a nevus owner.
Rather than posting the entire 30-page paper here, I am posting the Abstract. Medical legends and lore not based firmly in reproducible evidenced based science must be challenged and brought into question otherwise no one will seek out the truth. In the instance of a cure for NCM we have been looking for a needle in a haystack; this paper is part of a larger collaborative effort lead by others that has cut the haystack in half, and allowed a more focused search by using a magnet instead of tweezers. But none of my work has been possible without the work of the giants whose shoulders I stand on, nor the caring selfless compassion of a lady who passed away 8 days ago. I am but a conduit who seeks to share a little light in the darkness.
Study of 1,160 Large Congenital Melanocytic Nevus Patients Shows No Connection to Primary Cutaneous Melanoma
A retrospective study on an internet based registry of patients with Large Congenital Melanocytic Nevi (LCMN) was conducted to explore possible misconceptions regarding morbidity and mortality. Prior studies based on the Nevus Outreach, Inc., Registry (NOIR) utilized a relatively small sample size (n = 379) and may have failed to uncover significant disease processes. The addition of >750 subjects to NOIR in the subsequent decade offers the possibility of greater insight into the underlying epidemiology of LCMN.
Consistent with prevailing medical opinion of the past four decades, it is hypothesized that LCMN correlates to a higher risk of morbidity and mortality via primary cutaneous malignant melanoma (PCM).
To challenge this hypothesis, non-parametric models, descriptive statistics and National Cancer Institute’s database—Surveillance, Epidemiology, and End Results (SEER)—were utilized. Following IRB approval from Methodist University, NOIR data was acquired and curated according to National Institute of Health (NIH) guidelines for rare disease registries.
Analysis of NOIR was first conducted in comparison with prior studies. From this review it was determined that sample size from various geographic areas within the data were insufficient to identify a geographic bias. It was additionally concluded that previous sample size was insufficient to draw conclusions based on a single verified finding. Previous conclusions of significance of phenotype correlating to a specific comorbidity remain valid. Other conclusions regarding gender, LCMN size and LCMN location, whether implicit or subsequently inferred based on correlation to a single variable, lack statistical validity.
Researchers have struggled with correlating case study evidence and anecdotes of LCMN-linked melanoma to the reported patterns of morbidity and mortality within NOIR. The present study concluded that the additional data revealed a reported epidemiology of melanoma prevalence over a lifetime similar to SEER for the general population. Moreover, when prevalence of NOIR melanoma by age group was assessed for consistency with a diagnosis of primary cutaneous melanoma (PCM) in SEER, the diagnosis of PCM in the NOIR subjects was found to be overstated. The hypothesis that LCMN correlates to a higher risk of PCM was found to be false to a high degree of significance (p < 0.01), in that previously described cases of primary cutaneous melanoma arising within congenital melanocytic nevi are not melanoma.