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 pjscoleman@outlook.com.  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 miguel.reyes@chp.edu  

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. http://www.ncbi.nlm.nih.gov/pubmed/26266759 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 4^th 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.

 

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 4^th 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 paul@e-colemans.com 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