Author: John Jeffers

October 20. It shows up each year whether we want it to or not. The inexorable march of time—knowing no limits and showing no favoritism to its subjects—ensures we are afforded ample opportunities to reflect on the tragedy of Sam’s death.

It’s easy to feel the pain and magnitude of the loss; all too easy to suffer the mental and emotional anguish of losing a child so young. It’s easy to feel the burden of guilt being carried from knowing that we’re still here and he’s gone. It’s easy to feel sorry for ourselves.

I was reminded this year, however, by a note from my sister, that it’s also possible to see and feel something else. Sam’s death led to the birth of the Sam Jeffers Foundation—which works hard to help ensure future Sam’s will have a different outcome.

Sam’s Foundation—like the proverbial Phoenix arising from the ashes—helps us cope with the tragedy and allows us to march forward hand-in-hand with time to try to do something good. The legacy that Sam has left stands firm in the face of adversity and shines like a beacon to offer hope of a brighter future for children diagnosed with cancer.

We know all too well that what happened to Sam can befall any of us—child or adult–at any time. We also believe that an important part of the solution is allocating more resources to childhood cancer research. We believe that money spent on childhood cancer research trickles up to also benefit adults with cancer. It’s a win-win situation and part of a virtuous circle that can lead to safer, more effective treatments for everyone.

Sam’s death serves as a constant reminder that we can do better for children who need our help—in turn making us all winners in the end.

Five years ago today our son Sam died from a brain tumor at the age of eight.  Just 13 months earlier he was diagnosed with a bi-thalamic glioma, which is a rare and presently incurable childhood cancer.  

It doesn’t get any easier with the passage of time.  Some days are better than others, true; but there are just as many “some days are worse than others”.  Let’s be honest—the death of a child is never going to be easy or something you get over.

The silver lining to the cloud of Sam’s death is that many, many people now know his and kids like his story, now know                                                                  about the  problem of childhood cancer and want to do something about it.  Since forming the Samuel Jeffers Childhood Cancer Foundation in his name and honor in 2014—because of the generosity of our supporters—we have been able to accomplish things that I know would make Sam proud.

Seven decades ago  Dr. Sidney Farber at Boston Children’s Hospital did pioneering work on childhood leukemia, which at the time was essentially a death sentence for those who contracted it.  Dr. Farber is widely regarded as the father of modern-day chemotherapy. For all its shortcomings, chemotherapy has been responsible for saving millions of people’s lives—children and especially adults—from the effects of myriad cancers.   And it came about primarily due to the efforts of researchers devoted to finding a cure for children afflicted with leukemia.

                                                         Fast forward to today and the lab of Dr. Mark Souweidane at Weill Cornell Medicine and the work of the Children’s Brain Tumor Project.  Dr. S is helping pioneer in children’s cancer treatment something called convection enhanced delivery, where he has been able to inject therapeutic agents across the blood brain barrier directly into the site of children’s brain tumors, achieving concentrations nearly 1000 times greater than traditional IV chemotherapy.  If Dr. S’s work continues to prove as successful as it has to date, the implications could be vast, not just for children with rare and deadly brain tumors but for any medical condition where direct delivery of medicine to the brain might prove beneficial—think Parkinson’s, epilepsy, dementia, Alzheimer’s and many other ailments.  Once again, we see pioneering work being done on rare childhood cancers potentially benefiting a broad swath of the human population.

 For decades we have been fighting this battle against cancer in some respects backwards.  Of the billions of dollars we spend annually on adult cancer research, seldom does that money trickle down to benefit children, because children’s cancers and their bodies are different.  Currently, one in five children diagnosed with cancer die within five years and of those who live, up to 75% suffer significant long-term complications from the very treatment intended to save them.

But—here’s the critical point—money spent on childhood cancer research can and does trickle up to benefit adults and society as a whole.  That’s what Sam’s Foundation is all about. We exist to help fund cancer research intended to save the lives of children who currently face death sentences from their cancers while at the same time offer hope for long-term, far-reaching translational benefits to society as a whole.  

It is our deepest desire for Sam’s death to have not been in vain.  If collectively our efforts can save the life of just one other child such as Sam, I would consider all our work to have succeeded.  And with increased awareness and funding, we are of the opinion that this goal is not a question of if but when.   

 A father shouldn’t need to answer the question “What would you like to do on Father’s Day” with “I’d like to visit my son’s gravesite.”  For thousands of dads across the country today, this day is bittersweet, as bereaved fathers are reminded that a part of what made them a whole person is now gone forever.

Childhood cancer is a larger problem than most people realize.  Although certain types of childhood cancer—notably the most common type leukemia—have 5-year survival rates of 80-90%, many other types of childhood cancer have a survival rate of zero.  Further, even those childhood cancers boasting relatively high 5-year survival rates, fully two-thirds or more of those affected children will suffer significant to severe long-term complications from the “treatments” that were supposed to save their life.   Sam’s Foundation exists to fund research for childhood cancers that are currently death sentences to those who contract them and funds research aimed at finding safer, more effective treatments for all types of childhood cancer.  By focusing on these two critical aspects of the problem of childhood cancer we hope to benefit a dramatically underserved  segment of the childhood cancer landscape while at the same time offering translational benefits that extend to all childhood cancers—and beyond.

In these problems—which should by no means be minimized as they are literally a matter of life and death for our children—there is also tremendous opportunity.  And it’s a far larger opportunity than I believe society today realizes.  Sam’s Foundation wants to change both that perception and reality.

We believe that money spent on adult cancer research seldom trickles down to benefit children diagnosed with cancer because children’s cancers—their situation, their needs and their bodies—are different than adults.  The same poison we administer to the 60-year old woman with breast cancer or the same radiation we use to blast the 70-year old man with prostate cancer do not have the same effects on the bodies of a 6-year old child.   Yet, when we fund research to save children’s lives and develop safer, more effective treatments for children with cancer, the results can and do trickle up to benefit adults.

 

This is such a critical point that I want to repeat it again—when we fund childhood cancer research we are in fact also funding adult cancer research.  Yet the opposite is not always true.  The reasons that we do not fund childhood cancer at the same level as adult cancer research seem, on their surface, logical enough.  Those 46 children diagnosed every school day amount to about 10,000 children per year.  Far more adults contract cancer than do children—a point we must concede.  But because of that, pharmaceutical companies have no economic incentive to spend billions on research for such a small addressable market.

Childhood cancer research is therefore a “pure public good”, meaning traditional capitalism does not offer the most efficient means of addressing the problem.  That’s why it is up to us—the families, the friends, the community, and yes the government—to fund this critical need.  What Sam’s Foundation wants people to know is that childhood cancer research is a wonderful investment with a payoff far beyond the fundamental desire of protecting our precious children.  It is also an investment in the rest of society—your brother, your sister, your mother, your father, your best friend and your neighbor.  We all benefit from finding safer, more effective treatments for cancer—and children are at the vanguard of that effort.

 

So our mission—Sam’s legacy—is to help people see the opportunity in front of us that comes from the devastation of losing far too many precious lives far before their time should have come.  This is an opportunity to turn proverbial lemons into lemonade.  It is not a coincidence that Sam’s Foundation derives a significant amount of its funding from lemonade stands around the community.  Those lemonade stands are symbolic of our desire to turn something bitter into something sweet, to turn devastation into something meaningful and worthy of the loss.

I believe that through increased awareness of the problem of childhood cancer—far too many children who die and far too many children who live suffering lifelong consequences—we will eventually come to realize that the solution—increased awareness and funding—will extend far beyond the walls of children’s hospitals.

Please consider becoming a part of the solution by supporting increased awareness and funding of our collective futures.  Do it for kids like Sam.  Do it for your family.  Do it for all of us.  But do it.

April 2, 2005.  8:59 am.    We had just entered the hospital not much more than 10 minutes prior.  In fact, our official check-in time was 8:52 am.  While we were waiting for a room to be ready, Sabrina leaned against the wall, braving strong contractions and crying.  I finally managed to convince a nurse that we needed a room—now.  They hurriedly threw clean sheets onto an unoccupied bed and helped Sabrina get undressed and onto the bed.  A few minutes later—at 8:59 am—our third child’s beautiful face emerged.  The first of many memorable moments with Samuel Alexander Jeffers was in the record books.

 

Sam had a real sense of humor and a way with words that would make you chuckle or shake your head.  I recall one day when Sam and his big brother Ben were playing a game.  “Sam, use your brain!” needled Ben.  To which the 4-year old Sam replied “Ben…I’m a BOY.  I don’t have a brain, I have a penis!”

Another time, immediately upon waking up, Sam blurted out: “My brain and heart just woke up…. but my eyelashes aren’t looking any good.”  And one day while eating breakfast: “Wow, when I drink this milk it courses through my body and makes me come alive.”

Just as Sam’s birth and sense of humor were not without drama, so too were other moments.  On a trip to Scotland—the last vacation or meaningful time we would all get to spend together as a complete family—Sam was having a grand old time running around outside a Scottish tea shop up in the rural hills outside Ullapool.  He decided to run down the long steep hill the property sat on and got up too much speed, running smack into a barbed wire fence.  Ouch.

I rushed down the hill, picked him up and carried him up into the tea shop where the owner brought us into the bathroom.  We sat him down on the toilet and took off his clothes, revealing multiple cuts across his chest, arms and stomach from the barbs.  The shop keeper poured a liquid of some sort—the Scottish equivalent of hydrogen peroxide I believe—onto his wounds.  Sam’s eyes rolled to the back of his head and he began convulsing.  We held him and kept him safe until the convulsions stopped, then we gathered our things, jumped into the rental car and headed hurriedly down the mountain towards the town we were staying in.

In the end, an incredibly kind women who worked at the local health clinic saw us standing outside, let us in after hours, called the local doctor who came and treated Sam, and for the most part all was well.  Although we believe the two events to be unrelated, in my mind that incident will forever presage the horrible seizures Sam would have in the not-too-distant future, while dealing with the brain tumor that was diagnosed just three months later.

It’s funny—or perhaps not so funny—how life can throw at you unexpected events that test every fiber of fortitude, courage, faith and discipline that you can muster.  It has now been thirteen years since Sam was born—and almost five years since Sam died.  In retrospect, it seems unimaginable that everything we went through from Sam’s diagnosis in September 2012 to his death in October 2013 actually happened.  Perhaps in part because I have blocked some of it out, perhaps in part because the passage of time dulls our senses and clouds our recollection, but it was like a hurricane that left a trail of destruction in its wake.

I do know that in Sam’s eight short years of life—the seven glorious healthy years and the one tragic year alike—he had an incredible and lasting impact on us, those who knew him and, through his Foundation, many more who did not know him but who do now.  Sam’s Foundation has been able to support several important, ground-breaking research projects on the tumor that took his life, providing hope that in the future other children facing a similar prognosis might live.

Further, the translational benefits of targeted pediatric cancer research like Sam’s Foundation is supporting are significant.  As you have no doubt heard us say many times in the past, adult cancer research does not always trickle down to benefit children with cancer because their bodies and needs are different than adults; yet, money spent on childhood cancer research can and does “trickle up” to benefit adults and society as a whole.  When we fund childhood cancer research we are, in fact, funding crucial medical research generally.

Sam would have been 13 years old today.  He would have been celebrating his bar mitzvah and engaging in a mitzvah project this year.  Now of course he can’t.  But we can.  Join the fight.  You never know when your actions or your dollar might be the cure for another human being.

Happy Birthday Sammy.  We love and miss you with all of our heart.

Four years ago today our son Sam died from cancer. It is impossible to convey in words exactly how that leaves a parent, in terms of how we feel, how we now perceive the world, and how we now are “supposed” to live our lives as bereaved parents. We feel it, deeply, yet we cannot fully express what we are feeling.

As the years pass, contrary to logic, the loss of Sam has become no easier to cope with. True, on any given day you might catch Sabrina or myself on a “good day” where our social functioning is firing on most cylinders. But there are days—or perhaps more accurately times within days—when we can’t fully distinguish fact from fiction or reality from horrific fantasy; times when we feel lost in an altered state of being that renders us less than whole.

A child is a part of yourself—whether we acknowledge it or not there is a little bit of “us” in them and “them” in us. That’s normally a good thing and a natural thing and is inherent in being a parent. And so to lose a child is to in effect lose a part of one’s self. It’s not that you can’t go on—it’s just that you go on knowing that you are not quite whole anymore, that some piece of you—an important piece at that—is missing. And there is something about this distorted cognition of self that alters your interaction with the world around you.

In order to cope–in order to find that missing piece–after Sam’s death Sabrina and I made the decision to try to do something that might help others who have to face the same fate as Sam or we did. We came to the conclusion that ultimately, this battle will be won by focusing on the end game—on trying to solve the big picture questions of life or death that science or medicine or technology might offer us. So we decided to start a Foundation focused on funding research that would offer the possibility of long-term solutions to difficult problems.

For some perspective, in the mid-1940s, children and adults with leukemia were confronted with what amounted to a death sentence. Leukemia was first described as a disease sometime around 1845, and its earliest victims fell almost universally to a painful death, often within weeks of diagnosis. Leukemia was in many ways a symbol of medicine’s longstanding powerlessness against many diseases of the ages. But little did the world know that medicine was on the verge of benefitting from a post-war boom in research that would revolutionize treatment paradigms for many diseases. Dr. Sydney Farber was one man who looked deeply into the problems of the day and saw a different, brighter future.

Dr. Farber was a pathologist from Harvard medical school who worked at Boston Children’s Hospital. Dr. Farber knew from previous researchers’ work that folic acid stimulates the growth and maturation of bone marrow. He postulated that if a drug could be found that chemically blocks folic acid, it might shut down the production of abnormal marrow associated with leukemia, a disease of the white blood cell-making tissue of bone marrow.

Dr. Farber eventually demonstrated that aminopterin, a compound related to the vitamin folic acid, produced remissions in children with acute lymphoblastic leukemia (ALL). Aminopterin blocked a critical chemical reaction needed for DNA replication. That drug was the predecessor of methotrexate, a cancer treatment used commonly to this day. After Dr. Farber’s early work, researchers discovered other drugs that block different functions in cell growth and replication. The era of chemotherapy had begun.

Metastatic cancer was first cured in 1956 when methotrexate was used to treat a rare tumor called choriocarcinoma. Throughout the 1950s and 1960s Dr. Farber continued to make advances in cancer research, notably the discovery that the antibiotic actinomycin D and radiation therapy could produce remission in Wilms’ tumor, a pediatric cancer of the kidneys. Over the years chemotherapy treatments successfully treated many people with many different kinds of cancer—ALL, Hodgkin disease and testicular cancer all saw cures within a decade or two.

Dr. Farber’s work was historic not just because of its real-world practicality and results, but because it represented an expansion in vision—a new paradigm in thinking that would usher in a wave of dedication and discovery. Dr. Farber’s brother was quoted as saying: “He [Farber] saw that if cancer was going to be conquered, it would require a concerted national effort and a major funding commitment by Congress.” Perhaps even more importantly, Dr. Farber was known for believing that “In cancer, the child is the father to the man”. His successors, including Dr. Emil Frei III, have elucidated Farber’s thoughts by explaining that “Progress in cancer research at the clinical level almost always occurs in pediatrics first. Many of the treatments we now have for adults are based on what we learned with pediatric patients.” This is critical to grasp.

 

We strongly believe that cancer research can be a “bottom up” process, where each small success builds upon itself, fueling further advances—advances that often spread far and wide across a spectrum of other cancers and other medical conditions. Dr. Farber’s efforts on childhood leukemia, Wilms’ tumor and other childhood cancers are further evidence of our belief that “trickle up” works in cancer research. In other words, money spent on adult cancer research seldom trickles down to benefit children; but advances in childhood cancer research can and do trickle up to benefit adults and society as a whole. When we fund childhood cancer research we are in fact funding adult medical research as well.

Sam died because research in cancer has historically been focused on the most common of cancers. Sam’s Foundation, along with others who understand the special problem—and opportunity—of childhood cancer, as did Dr. Farber, is trying to broaden the scope of research beneficiaries and push the needle of progress even further. Awareness=Funding=Research=Cures. Please, join the fight. It is working.

www.samjeffersfoundation.org   

Five years ago today we sat in a small Arroyo Grande (CA) hospital room, waiting to hear the results of what would be the first of many MRIs that Sam would have over the next year. After an initial visit with me and Sabrina, Dr. Young eventually came into the room where all three of us sat and told Sam that there was “something inside his head that shouldn’t be there”, to which Sam said: “Well, is it life-threatening?”  Dr. Young looked at Sam, seemed to conclude that this seven year old was perhaps wise beyond his years, and replied “Well Sam, lots of things can be life threatening, but we have ways to treat them.”  And Sam said: “Okay”.  Thus began a tortuous journey that culminated exactly 13 months to the day later—with Sam dying in our living room.

 

Over the past five long years, I have experienced the gamut of emotions from Sam’s death, and over the next five and beyond, I will no doubt continue to feel tossed around by the intransigent ups and downs that life after the death of a child brings.   Oddly though, I have come to realize that for me one of the worst of the emotions I’m plagued by is the fear that Sam will be forgotten.

I don’t know if this fear is common among bereaved parents.  I’ve only spoken about it, quietly, almost sheepishly, with one other bereaved parent I know. To my surprise, this mother confessed that she too feels the same way.  It seems that we are terrified that our child will be forgotten, and the thought of that screws itself into our brains and makes us even more morose.

I don’t pretend to know the psychology behind this feeling, this fear.  It might simply be a sign of some deep-seated insecurity that I myself harbor.  I only know that for me it is real, and though I’d rather not admit it, I must face the reality that it exists deep inside of me.

Perhaps then it should come as no surprise that when I see a new rock has been placed on Sam’s tombstone (yes I notice) or when someone at a fundraiser comes up and says “I remember Sam” or “My daughter is always talking about how she remembers Sam” or “My son was just telling me that he remembers playing on the playground with Sam”, etc., etc., it’s simply the best feeling in the world for this father. 

Maybe I don’t want anyone to forget Sam because I don’t want anyone to forget that childhood cancer is a serious problem.  September is Childhood Cancer Awareness Month, and so now, more than ever, I want people to know that every day 40 or more children are diagnosed with cancer in our country.  I want people to know that about 20% of those children will die within 5 years.  I want people to know that about 35% of them will die within 30 years.  I want people to know that even those that survive stand about a 75% chance of suffering from significant to severe complications later in life, from the treatment that was supposed to save them.  I want people to know that large pharmaceutical companies have no incentive to spend billions of dollars on a market they deem insignificant, and that the US government spends only 4% of its cancer budget on children and the American Cancer Society even less.  And finally, I want people to know that it currently falls upon us—the parents, grandparents, family and friends of the children diagnosed—to protect these children and help find safer, more effective treatments. 

This problem will not go away by itself.  But there is hope—real hope.  Decades ago things like chicken pox, rabies, TB, influenza, polio, HIV and many other diseases were known to be death sentences for those who contracted them.  Today, all of these have been either largely eradicated or at least greatly diminished in their power to take lives.  Awareness led to funding which led to research which led to cures.

I believe that someday cancer will be included in that list.  The answer will be found in research and through medical breakthroughs that come about from dedicated doctors and researchers who are given the resources to follow their life’s passion and do great things.  I also believe that we will eventually come to realize that money spent on adult cancer research seldom “trickles down” to benefit children, but that money spent on childhood cancer research can and does “trickle up” to benefit adults and society as a whole.  I also believe that Sam’s Foundation can play a key role in that discovery.

If I had only one wish today, on this fifth anniversary of my son’s diagnosis, it would be that his death was not in vain; that his memory will live on and inspire and empower ordinary people to do extraordinary things.  The Samuel Jeffers Childhood Cancer Foundation exists with the mission to do just that.  And I think Sam would be proud of that.

www.samjeffersfoundation.org/contribute