Oct 20, 2019

October 20

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.

Jun 17, 2018

Father’s Day

 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.

Apr 02, 2018

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.

Oct 20, 2017

October 20, 2017

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.

samjeffersfoundation.org   

Sep 20, 2017

Five Long Years

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.

samjeffersfoundation.org/contribute

May 29, 2017

Our Memorial Day

May 29, 2013. Four years ago today we sat in Dr. Brown’s office at Children’s Hospital of Los Angeles waiting for the results of the MRI scan. Our “scanxiety”—as they call it—was high. Three weeks prior Sam’s behavior had taken a subtle, but noticeable turn for the worse. His balance was off, his focus was diminished, and there was an increased amount of “glazed eye” episodes—times he just wasn’t paying attention to us. None of these things, of course, were normal for Sam. He had been a healthy, energetic little sparkplug, and a highly attentive, focused and high-achieving learner.

All of that came to an abrupt halt starting around May 29, 2013. Dr. Brown came into the room and sat down. I can’t recall exactly who spoke first. It might have been Sam—that would not have been out of character for him at all—but someone asked what the results of the MRI were. I do recall very clearly what Dr. Brown’s response was, and he addressed Sam directly:

“Well, Sam, everything is relative.” Then he drew a picture of how large the three—yes, there were now three—tumors growing in Sam’s head were. Each was bigger than the last time, and Sam knew it.

Sam: “Wow…That’s surprising…Because…I mean…We were just thinking that the tumor was going to be this big (holding out his hand and forming a tiny circle with his thumb and index finger).”

The rest of that brief meeting at CHLA is still a blur to me. We were told by someone—though I don’t think we actually comprehended the magnitude of this at the moment—that Sam would be placed on hospice. We staggered out of there and found our way down the street to the local Denny’s—Sam’s favorite restaurant and what had always been a haven for him, a respite from the poking and prodding and scans of the hospital. Although Sam ordered “the usual”—mac-n-cheese, grapes and goldfish—I think even Sam suspected that “this time was different”. Although he did not know that he was now terminal, I believe he knew things were not good.

As we’ve written about before, on the ride home, on the Ventura highway, with the vast blue ocean to our left and the looming mountains to our right, Sam lashed out, and for the first time in his battle against cancer he cried: “It just seems like everything is just…just…IMPOSSIBLE!!!” he screamed, with tears streaming from his beautiful hazel eyes. It was at once both the angriest and saddest moment of my life.

Realizing that your child will die—soon—is like getting every bit of air, every ounce of life, squeezed out of you. It was at that moment that I felt that I had absolutely failed—utterly, completely, 100% failed—as a father. I felt that I had let my little boy down by not doing enough. I didn’t really know what that “enough” was, or what I should or could have done, but I felt like a hollowed out shell of a person nonetheless.

As a parent our fundamental concern is the health and well-being of our children. It is our utmost priority. It is the foundation upon which our children’s future happiness and achievements rest. When we watch our children get hurt, even a minor injury, it hurts us. And so the pain of something like childhood cancer is indescribable. No child should ever have to suffer through it. No family should ever have to suffer alongside them.

There is a solution, though. It isn’t immediate, it isn’t an elixir in a bottle or a quick fix, and it certainly isn’t easy, but a long-term solution is in the offing. It’s called research. And our take on research is that money spent on adult cancer research does not often “trickle down” to benefit children, but money spent on childhood cancer research can and does “trickle up” to benefit everyone. That’s why we do what we do at Sam’s Foundation

Today, as we remember and pay honor to the many selfless men and women who gave their lives in service for our country, so too do we remember the many children who have lost their lives to this terrible disease called cancer. Thank you to all of you for your continued support of Sam’s Foundation. It is making a difference.

Apr 02, 2017

Birthdays & Black Holes

Today our son Sam would have been 12.  When I originally sat down to write this blog I had plans to make it cheerful or at least upbeat—really.  After all, a birthday should be a celebration of life.  But the truth is…that’s really not where my heart is right now.

The struggle between how you’d like to think and feel—in contrast to the reality of how you think and feel having lost a child so young—is palpable. Bereaved parents don’t want to be “Debbie Downers”; we don’t like feeling sad; but sometimes that’s just our own personal reality.  The “new normal” as they say.

Don’t get me wrong.  There is a lot to be thankful for and, perhaps even more so than others, bereaved parents are indeed thankful for what we still have—our other children, our spouses, our family, our friends, a very supportive community, an opportunity to do good and make a difference—the list is quite long.

Yet, there remains a hole in our hearts—a hole in our lives—that is not so easy to fill.

Though there are no perfect analogies, I sometimes liken the loss of Sam to a black hole.  A black hole is so powerful that nothing—no light, no particles—can escape from inside it. And as you draw nearer to a black hole you at some point cross the Rubicon.  I’ll just quote Wikipedia verbatim: “The boundary of the region from which no escape is possible is called the event horizon.  Although the event horizon has an enormous effect on the fate and circumstances of an object crossing it, no locally detectable features appear to be observed.”   Yep.  I can relate to that.

There’s no accounting for when the black hole might start to suck you in.  But if and when you approach it, its effects can be devastating.  As it tries to pull you in, you start to feel like you’re suffocating.  You dread being lost forever in its dark recesses and vast nothingness.

And so you often try to avoid the hole entirely.  You occupy your days with work and your nights with activities.  You keep your mind busy with “stuff” or “things”.

But in the dim recesses of your mind you know that by avoiding your pain and suffering—by avoiding the Black Hole—you’re unwittingly avoiding your child.  You’re avoiding his memory, his life and his love.  And so you’re continually drawn to the event horizon.

You cherish happy memories. You celebrate birthdays and holidays and recall happy thoughts of bygone days.  You cling to his old toys and clothes, flip through photographs, and say a little prayer at night asking for a dream with your child in it.  You feel that he’s in that hole and you want to go in there and get him, save him, pull him out and bring him back—to be with you again forever and ever.

Thus, the life—the event horizon—of a bereaved parent can be exhausting.  Our lives look normal—“no locally detectable features appear to be observed”—yet they are really anything but normal.  Though bereaved parents are not so unique from anyone else who has lost a loved one—we do not have a monopoly on pain and suffering—the loss of a child does seem to suck just a little more life out of you.  Just like I could never imagine what it must have been like to sit in a foxhole in Vietnam or Korea or Iraq and watch my comrades lose their lives and fear for my own, because I myself did not walk in those shoes, we humans all have our own unique pain and suffering to sometimes deal with.

At the end of the day perhaps all we can do is fill our holes with love.  Maybe the pain we feel is only so great because the love for whom we lost was so immense.  Perhaps we suffer only in direct proportion to the love we felt and shared.  And so today we celebrate the memory of a little boy whose happiness, zest for life, hunger for learning and love of others inspires us to this day.  Happy Birthday Sammy.  We miss and love you very much.

samjeffersfoundation.org

Oct 20, 2016

Three Years

Three years ago today our son Sam died.  He was eight years old.   Just 13 months prior to that he was diagnosed with a brain tumor out-of-the blue.  He had been a bright-eyed, energetic, loving and highly intelligent little boy.  After a brief but brutal fight he succumbed.  Cancer took his precious life.

Over the course of those 13 months we saw Sam develop a tremor in his hand that bothered him both physically and emotionally.  We saw him gain nearly 50 pounds from steroids, lack of exercise and little else to do but eat.  We suffered along with him as he told us about the ringing in his ear, which we couldn’t make go away.  We stood close to him and held his hand as he began to lose his balance and co-ordination.  We sat next to him and protected his shaking body through numerous difficult seizures, including one that lasted nearly 3 hours.  We wheeled him places in his wheelchair when he lost the ability to walk.  We saw him lose the ability to go to the bathroom by himself and eventually lose control of his bladder and other bodily functions.  We looked on helplessly as he lost both his memory and extraordinary mental faculties.  We leaned-in close to hear him as he whispered and struggled with words until he could no longer speak at all.  Shortly thereafter he also lost the ability to eat and drink, save the drops of morphine we had to administer down his throat to ease the pain from the swelling in his brain.  We surrounded him and held him as he took his last breaths of air on our couch under a full moon at 6:31 am on October 20, 2013.

That’s the short story of a kid who loses their battle with cancer.  It isn’t pretty.

Sam had a bi-thalamic glioma, a type of brain tumor that, because of its location and the nature of the cancerous glial cells, could not be operated on.  Inoperable brain tumors currently call for treatment either with chemotherapy or radiation or both.  Neither treatment is desirable; each has its own horrible consequences and ill-effects.  All of us have likely heard or seen the stories of other children—many right here in our own community—who have suffered the effects of both cancer as well as the potentially devastating effects of the cancer treatment itself.

Despite all this, perhaps because of this, Sabrina and I strive to remain positive.  We have decided to harvest what could be loads of negative energy and channel it into a positive avenue—Sam’s Foundation.  Sam’s Foundation is all about using the money we receive from donors to try to find cures, searching for and funding better treatment options for children with cancer, helping local families with financial needs and in general trying to raise awareness that childhood cancer is a serious problem and that we can do better as a society in the fight against it.  These are things that will pay dividends years from now and hopefully pave the way for healthy lives for future generations.

With the help of some amazing Cal Poly students, who took it upon themselves to help us spread our message, and with some wonderful assistance from the Krasner-Green family who helped add the finishing touches, we’d like to share this >video. Special thanks to Baylor Hunstad, Casey Li, Jessica Redmond, and Brian and Paul Green for their extraordinary efforts and talents.

As always we appreciate everything our supporters have done for us over the years.  We are honored to have met so many wonderful people and have been lifted by all of the kind hearts.

John & Sabrina Jeffers
samjeffersfoundation.org

Sep 20, 2016

Diagnosis Day

Today marks the 4-year anniversary of Sam’s diagnosis with brain cancer.  Just a little over four years ago, we were a happy family of five, and everything seemed nearly perfect in our little corner of the world.  Everyone was healthy, happy and had their entire lives to look forward to.  And then, in an instant, our lives changed—permanently. 

We will never know what our Sammy could have grown up to be.  Instead of a world of possibilities Sabrina and I now have only a world of what might have been.  Cancer robs so much from the world when it takes an innocent soul. 

I could write about how unfair life is.  I could write a long torturing post about all of the bad things that Sam and we experienced from the time of his diagnosis through his crappy treatment and ultimately his death.  I could also curl up into a little ball in the corner and cry and feel sorry for myself.

Instead, I just want to reiterate the main message that we are trying to spread:  There is currently an abysmal amount of money spent on childhood cancer research; money spent on adult cancer research seldom trickles down to benefit children with cancer because their bodies cannot take the same kinds of treatment that adults can; and, the critical point, money spent on childhood cancer research can and does “trickle up” to benefit adults.  When we fund childhood cancer research we are in fact funding adult medical research as well.

Last blog I wrote about why we fund the Samuel Jeffers Thalamic Glioma Fellowship at Weill-Cornell Medicine .  I used Project Violet, another research effort we support, as an example of ground-breaking, pioneering work done by doctors and researchers who have devoted their lives to studying childhood cancer and who discovered a tool—Tumor Paint—that now stands to benefit all of society.  Today, I’d like to give another example of “trickle up”. 

Long-time followers will know that Dr. Mark Souweidane, head pediatric neurosurgeon at Weill-Cornell in NYC and co-director of the Children’s Brain Tumor Project, is the spearhead of our efforts to crack the thalamic glioma code.  We stumbled across Dr. S through our research into promising pediatric cancer treatments for DIPG—another deadly brain tumor that kills far too many children.  Dr. S has pioneered a drug delivery mechanism called Convection Enhanced Delivery (CED) whereby drugs or other therapeutic agents can be delivered directly into the tumor site, by-passing the blood brain barrier and offering a fighting chance for the medicine to have some effect on hard-to-reach tumors.  In this trial, Dr. Souweidane was able to achieve concentrations of 1,000 times or more than what can be achieved with traditional IV chemotherapy. He was also able to design and test new ways to measure those concentrations at the tumor site and monitor how long the drug stayed in the tumor. Read more here.

As wonderful as are the direct benefits to children of such a project, the translational benefits of using CED for DIPG has the potential to further evolve into a project that Dr. S expects to define many additional elements of local drug delivery to the brain.  Aspects such as device design, dosimetry measurements, drug labeling, monitoring pharmacokinetics, and many others, can be applied to not only other brain tumor strategies but any disease in which drug delivery to the brain is crucial.  What this means is that Dr. S’s work on children’s brain tumors could affect treatment for a wide host of other ailments including infections, degenerative diseases like dementia or Alzheimer’s, movement disorders, and epilepsy.  DIPG—a children’s brain tumor—has afforded us the opportunity to translate an innovative and adventurous treatment paradigm for children into an actual clinical tool with widespread potential applications—for children and adults alike—even outside the world of cancer treatment. 

This is yet another example of how by helping children with cancer we are in fact helping ourselves.  By funding children’s cancer research, not only are we working to save the lives of our precious offspring; we are also potentially saving the lives of our siblings, parents, grandparents and ourselves.  We believe that’s a very wise investment. 

When Sabrina and I ask for donations to Sam’s Foundation, it’s important to know that we in no way directly benefit from that.  No one at Sam’s Foundation earns a salary or receives any benefits.  100% of the money that people give to “Cooking up a Cure…” goes to childhood cancer research or to local families with children battling cancer.  Click here to see where the thermometer is right now as we work towards our funding goal.  We need to raise $75,000 annually in order to fund the Thalamic Glioma program at Weill-Cornell, and we need your help!

Thank you so much for your continued support.

John Jeffers
samjeffersfoundation.org
Cooking Up a Cure for Childhood Cancer