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 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
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