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.
To learn more about Dr. Reyes this links to a in depth 2007 interview http://www.pathsoc.org/conversations/index.php?view=article&catid=58%3Amiguel-reyes-mugica&id=82%3Amiguel-reyes-mugica-full-transcript&option=com_content
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 Café 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 firstname.lastname@example.org 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