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

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.

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.

www.samjeffersfoundation.org

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
www.samjeffersfoundation.org


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. 

Future Scholar

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.

Future Rockstar

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”. 

Future Racer

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.

Future Engineer

Future Banker

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. 

Future Exec

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. 

Future Writer

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
www.samjeffersfoundation.org
Cooking Up a Cure for Childhood Cancer

Future Scientist

Future Chef

May 29. The day before Memorial Day, the day we honor those who died while serving our country.

May 29, 2013 replays in my head over and over like a broken record. Dr. Brown’s words drip on me like water torture. “There’s nothing more we can do.” How can that be? Three weeks ago we talked about holding back radiation—our cannon—for when we need it. What about now? “It’s too late”. Too late!? “It’s growing too fast. There’s a third tumor and it’s getting big. Quickly.” Boom.

That was just five months and 9 days after getting hit by our own personal D-Day, when we heard the first heart-stopping words from Dr. Young. “There’s a large tumor in there.” Pow.

September 2012, CHLA shortly after diagnosis

Four months and 22 days after May 29—our second D-Day—Sam died.

As a parent of a child who loses their battle against cancer, it’s as though you die three times: When they’re diagnosed; then again when they’re placed on hospice; and finally when they lose their battle and die. But there’s something particularly disconsolate about the day you’re told there’s nothing more that can be done.

After diagnosis, there’s at least some hope. When your kid gets diagnosed with an inoperable brain tumor, you know it isn’t good, but there’s hope. You do everything you can, think positively, pray and hope for the best. But May 29 took away almost all of our hope. It knocked the wind out of us. It seriously crushed us.

On the ride home even Sam lashed out, the first and only time he cried about his condition and this insidious monster that had invaded him and that was robbing him of his childhood—of his life. He screamed through tears: “It just seems like everything is just—just—impossible.” He didn’t know that he was now terminal, but he was reacting to the news that the tumors had grown and that there was now a third one. When Dr. Brown gave that news to him Sam said, very slowly and with deep sadness: “Wow. That’s surprising….because….I mean….we were actually thinking that the tumors were going to be this small”. And he held out his little hand and formed a tiny circle with his finger and thumb.

I was never so angry in my life. I felt like a complete failure. I had failed at a parent’s #1 job: protecting your children. I felt sickeningly helpless. I desperately wanted to save my son—I would have done anything to do so—but there was nothing left to do. A large piece of me died that day. And I’m not sure that piece will ever come back.

May 29, 2013

There are a lot of ways to deal with the loss of a loved one. Some of them horrible and self-destructive, and some of them positive and healthy. One of the things we have chosen to do, to channel what could otherwise be loads of negative energy, is to work through Sam’s Foundation towards a cure for pediatric cancers. Here’s the latest positive news on those efforts:Sam Jeffers Foundation Summer Fellow.

Vice President Joe Biden, whose own son died from a brain tumor, is leading an initiative–the National Cancer Moonshot Initiative—that hopes to make more therapies available to more cancer patients. Within this initiative, one of its areas of focus will be to intensify efforts to collect and analyze tumor specimens from the rarest childhood cancers, enlisting participation from the pediatric oncology community.

I sense that we—as a society—are at an inflection point and that we are on the cusp of making truly incredible discoveries that will breathe new life into efforts against cancer. Yet we must push forward, as hard as possible, right now. We have some momentum but we absolutely must keep going and in fact accelerate. The funding of the thalamic glioma Fellow at Weill-Cornell by Sam’s Foundation is just one way to do so.

Visiting with Sam

Sabrina and I would like to thank everyone who has been by our side over these last few years. It has made all the difference in how we have been able to cope with our loss. We also wish to thank everyone who has contributed time, talent or treasure to Sam’s Foundation. That is where we have poured much of our heart and soul these past few years as we strive to see to it that no other child has to meet the same fate as Sam. We thank you for fueling our passion.

Today, Sam would have turned 11 years old. For those of you who might be reading this for the first time, Samuel Alexander Jeffers was born on 4/2/2005. Suddenly, and out-of-the blue, on 9/20/2012 he was diagnosed with a brain tumor. On 10/20/2013 he died.

Certainly a lot of things happened in those intervening years between Sam’s birth and death: some mundane; many truly spectacular, precious and cherished; and some ghastly and tragic.

April 2nd, 2009-Sam’s 4th birthday. He asked for a cow.

Sam should have had many, many more years to his timeline. Many more opportunities to experience the mundane and spectacular alike. Instead, Sabrina and I now mark the passage of time with memories and “celebrate” unfulfilled or incomplete milestones. We continue to honor his name and celebrate his life and spread the gifts he gave us through our work at the Foundation that we established in his name, whose primary mission is to eradicate childhood cancers by funding research.

Sam’s Foundation supports many childhood cancer research efforts and provides financial assistance for local families of children with cancer. As part of this overall mission, we are currently trying to raise money to fund a fulltime researcher at Weill-Cornell Medicine who will study thalamic gliomas—the deadly brain tumor that killed Sam. I would like to take just a moment to explain exactly why we support targeted research on specific—sometimes rarer—forms of childhood cancer. I believe that there’s something of significant importance to be learned from the rationale behind this kind of targeted research.

April 2nd, 2010-Sam’s 5th birthday

The obvious reason for funding research on thalamic gliomas is of course because that is the type of cancer that our son had, and which doctors were helpless to save Sam from—because there has been absolutely no research done on it until recently. Ten years ago if a family had an opportunity to fund research on thalamic gliomas, it is possible that Sam might be alive today. Even the loss of one child’s life is unacceptable to me, so if we can find a way to crack the code on this deadly brain tumor, and not have this happen to another child, every penny spent will have been worth it.

The second, perhaps less obvious but immensely important reason to support targeted research for childhood cancer is because of the fact that what we learn from doingso is very likely to have “spillover” benefits elsewhere in the broader fight against all cancers. Let’s take just one example.

Project Violetis a collaborative effort by Dr. Jim Olson and researchers at the Fred Hutch Cancer Center, in conjunction with Seattle Children’s Hospital. In their work devoted to rarer types of children’s brain cancers, Dr. Olson and his team pioneered something calledTumor Paint, which acts as a “molecular flashlight” by chemically adhering to cancer cells and causing them to light up. Thousands of times more sensitive than MRI imagery, Tumor Paint enables surgeons to easily distinguish between deadly cancer cells and the surrounding healthy tissue, making tumors more operable. This amazing discovery came about because of the dedication of researchers spending their time solely devoted to vigorously searching for a cure for children’s cancers, especially rarer and deadly children’s brain tumors. Now the entire world stands to benefit from their discovery.

April 2nd, 2011-Sam turns 6.

To illustrate the importance of this, and using the theme of our Foundation’s motto “Cooking up a Cure for Childhood Cancer”, an analogy might be that if you are trying to perfect a recipe for veal piccata, in the process you are likely to learn a lot about cooking Italian food in general. Further, what you discover from the Italian cooking might very well help you in the preparation of your next Mexican cuisine masterpiece. The ratios and blends of oregano, garlic and coriander in the veal dish might prove fertile grounds for exploration for the next culinary experiment.

What we as a society have been doing to date in the battle against childhood cancer has not been as effective as it should be. The same poisons we use to treat the 65-year old woman with breast cancer and the same radiation we use on the 75-year old man with prostate cancer are not necessarily suitable for the 6-year old little girl with Ewing’s Sarcoma or the 8-year old little boy with a brain tumor. In fact, in some cases, the treatments themselves are—literally—deadly. Just because we discovered fire and use it as an important tool in the cooking process does not mean that we suddenly know anything about making a great veal piccata.

The same tools we use in the battle against adult cancer do not necessarily “trickle down” to benefit children’s cancers; yet, as the Project Violet example shows, discoveries and advances made in the fight to overcome childhood cancer can and do “trickle up” to adults. We have spent billions and billions of dollars for adult cancer research and invested an embarrassingly small amount on childhood cancer.

April 2nd, 2013-Sam turns 8

In the end, the fight against childhood cancer that we are waging is not just about Sam. It’s not even just about children. When Sabrina and I ask for contributions to Sam’s Foundation, what we are asking for is help in fighting cancer. Yes, we are driven passionately by the desire to eradicate cancer in children for obvious reasons. It pains us greatly to see children with this disease suffer or die—pains us indescribably and immeasurably. Ultimately, though, this is about all of us—our children, our grandchildren, our neighbors, our parents….you.

Please do what you can to join in the fight. If you would have given Sammy a birthday gift this year, please consider a gift to his Foundation. And consider it a gift from you to the world.

Happy Birthday Sammy.

2013-Sam’s last birthday

Two years ago today our Sam lost his battle with brain cancer. Often it seems like it was just yesterday when we held his hand, hugged him, kissed him, whispered “I love you” over and over again softly in his ear. We wanted Sam to know—desperately wanted him to know—how much we loved him, before he was gone.Before it was too late.

It is of course trite to say “love them while they are here”. We know that. But it never really hits you with its full magnitude until you lose someone so special, and so very dear to you. Someone that you felt connected to from the first moment you saw them, and whom you felt completely inseparable from. Someone who you never could have possibly imagined you would outlive. Someone who it was simply unthinkable that you would have to bury.

As we have written before, losing Sam in many ways still doesn’t seem real. There are times when I actually think to myself that he is away at camp or at a friend’s house or—I don’t know—somewhere, and that he will be home shortly. It is at those times that the loss becomes even harder to bear, because it comes as such a slap to the face when you realize that he truly is gone. And that he is not coming home today, tonight, tomorrow—forever.

As often as we feel that Sam was here just moments ago, so too do we often feel as if Sam died ages ago. In fact, sometimes it seems as though he might not have ever actually been here at all.As strange as that may sound, sometimes there is a blur between reality, delusion and nightmare.Sometimes, the fog and haze and pain of loss swirl together to form a cloudy nothingness, where you have trouble understanding what has happened, because it all seems so surreal. Surely, there is no possible way that God or anyone or anything else would ever take away an innocent child from his parents. That wouldn’t be right. That wouldn’t be natural. And so it couldn’t have happened, right? None of this must have happened.

All of these thoughts are fleeting.They happen in nanoseconds.They bounce around to and fro and pop in and out randomly throughout the day.There is no accounting for when we will think of Sam.There is no accounting for how we might feel on any given day. Sometimes I feel as though I need to see him so badly that I get in the car and drive to his grave. Sometimes I see scrolling pictures of him on my computer and I simply can’t bear to look.Other times, I eagerly pop my thumb-drive in and start going through all the pictures, and smile and laugh and sob uncontrollably.There is no accounting for any of it.< Years ago I sometimes thought of myself as a loner—someone who was more-or-less okay being alone. But I soon found out that’s not true. Not even close. When you find a companion, have children, start a family, make new friends, get a cat or dog—and then lose them—you realize how important it is to love and be loved. You understand the overwhelming joy of family, companionship, camaraderie.You realize the significance and true meaning of friendship. You see the importance and incredibly uplifting power of community.And ultimately you understand deeply what it means to do for others and leave a legacy for society.

I often tell people that I could curl up into a little ball in the corner and cry all day…..but what good would that do? Nothing at all. So instead, we decided to put one foot in front of the other and just keep going. And we also decided to pour our hearts into trying to make it so that no other child, no other family, has to go through what Sam or we did. Sam’s Foundation is starting to thrive. I think he would be so, so proud of some of the things we have been able—because of the generosity of others—to do in his name and some of the things that we have planned.< As a particularly moving example, the other day I received a phone call from Dr. Mark Souweidane of the Weill-Cornell Medical Center.Dr. Souweidane is the head pediatric neurosurgeon at Memorial Sloan-Kettering in NYC, and he is one of two doctors who runs the Children’s Brain Tumor Project.Dr. S called me to say thank you for our recent Foundation donation to the Brain Tumor Project.We chatted about his clinical trials and other medical and research issues.Then I asked him: “How can we best help? How can we really make a difference?” Dr. S told me that he’d like to see Sam’s Foundation set up a Fellowship at Weill-Cornell.A Fellowship in Sam’s name and in his honor that would fund a full-time, dedicated researcher that would work under his direction on ground-breaking research and pioneering projects and studies.What specifically would he research, I asked?Thalamic Glioma was the reply.I was stunned.

For those of you who don’t know, Sam had a thalamic glioma.As far as we know, there is no one in the world that has really studied thalamic gliomas.No one….until now. Dr. S would like to eradicate all types of brain tumors in children, but targetedresearch is critical, because even those brain tumors situated in the same anatomical region have distinct molecular and genomic features that might influence treatment plans. And even though these tumors are rare and require concentrated research efforts, there is every reason to believe that this targeted research will pay enormous dividends across the spectrum of children’s tumors. Every step forward we take in this area has a cumulative effect and builds upon itself, leading to further medical advances. For Sabrina and myself—and the Foundation—this is huge. It is an opportunity to both fund a project that is near and dear to our hearts and at the same time holds a tremendous amount of potential for broader advances in children’s cancer research.

We hope and believe that Sam’s Foundation, supported by the generosity of our donors and the community, will help build a bridge to tomorrow’s advances and breakthroughs that will give future Sammy’s a chance.Ten years ago, if another family had had an opportunity to do something like this, it is possible that Sam might have lived.Ten years from now, it is our fervent wish that some other child will be able to live if he or she hears those same dreaded words that we did.

To help us make this vision a reality please visit www.samjeffersfoundation.org.

Thank you so much.

Dear Sammy,

I once told you that you had the power to change the world.  You didn’t believe me, so we went outside and dropped a tiny pebble in the birdbath.  As we both watched the ripples, I said: “There do you see that?  That tiny pebble caused waves that went all the way over to the other side.”  You said “Wow” and I looked at you and told you that you’re just like that pebble.  What you say and what you do; how you treat people and how you make them feel, really matters.  If you say nice things and do great deeds and treat people well and make them feel special, you will change the world.  Because those things spread out like ripples on the water.

Little did I know Sammy, that you would in fact change the world.  Your smile.  Your laugh.  Your kindness.  Your personality.  Your humor.  All those things and more spread out like ripples on the water.  And the ripples touched a lot of people and they were felt far and wide.

Three years ago this month our world changed forever.  We were told that you had cancer.  “A lump growing in your head.”  Your first question to Dr. Young was “Well, is it life-threatening?”  Dr. Young said lots of things can be life threatening, but there are things we can do to stop it.  And you said “Okay” and you believed him.

When you needed your first blood draw at Children’s Hospital of LA, when the phlebotomist came in you said: “So, I understand you’ve been doing this for a long time, is that right?”  And the nurse said “Yes”, that was true, and smiled and laughed.

The first time you ever woke up from a surgery, as other children all around you were crying and vomiting, you opened your eyes, looked at me and mom and just smiled.  Oh, what an adorable smile you had.

The first time you needed to get accessed through your port for getting chemo you said to the nurse: “Okay, I’m going to just let you do it the way you feel most comfortable, and if I say “Ow” that means it hurts and so you might have to stop for a minute and try it again.”  But you rarely said “Ow” and all your nurses loved you.

The first time you went to Cottage Hospital for treatment, you cracked a joke with Nurse Julie and you and her laughed and laughed.  Dr. Green came into your room just to see what on earth could be so funny, and he ended up laughing right along with you.  That laugh of yours was incredible.  It came right from your soul, and everyone who heard it melted.  It was infectious.

The first time you were asked to swallow multiple pills, bigger than you had ever seen before, you said: “Okay, I’m just going to count to five and then I’ll be able to do it.”  And you did it.

The first time your little hand began to shake uncontrollably you found ways to deal with it.  When it got so bad that you could no longer play on the computer or other games you started doing other things that you could do.  You read.  You cooked.  You watched Giada De Laurentiis.

The first time you had a massive, two hour seizure, when you finally came out of it, still postictal, you simply asked for Cow and when you saw him you smiled.  I said “Hey Kid” in that outrageous Jersey accent, and we played a bit and everything seemed right in the world again, at least for that moment.

The first time you were put on steroids and started to eat uncontrollably and started putting on weight, you wrote up a “Sam’s Special Dietary Plan—New” and asked all of us to please help you follow it because you “wanted to be healthy”.

The first time you were told that the tumors had gotten much bigger you shared with Dr. Brown your eternal optimism: “Wow, that’s surprising, because we were thinking that last round of chemo had really worked and that the tumors were going to be this small (holding out your precious little hand and making a really small circle).”  And Dr. Brown had to hold back his own tears and could only say, “Well, Sam, everything is relative.”

The first time you started having trouble walking and you were offered a wheel chair you were so excited and happy.  You loved going on walks and being pushed and then saying “Can I get up and walk for a while?”  And you did.

The first time you realized you could no longer speak, you whispered and nodded and used sign language.  And you hugged.  Oh, how you hugged.

The first time you had trouble swallowing and eventually eating, you asked for soup and milkshakes and you enjoyed them as much as you possibly could.

And through it all, we came to realize how a precious little boy could change the world.  Though cancer was ravaging your body and stealing from you everything it could physically, you never lost your hope, your courage, or your love for life.  You brought out the best in your family, your friends, and your community.  You made us all realize what really matters in life.

You inspired us to try a little harder, be a little kinder, and do a little more to make a difference.  You taught us that life isn’t always fair, and there isn’t always a fairy tale ending, but that little things matter.  In your struggle you showed us grace, dignity, innocence and optimism that inspired all of us.  You taught us to love and be loved and to be content and at peace with the world.

Sam, we will never forget you and how you made us all better people.  In honor of you and in the spirit of Childhood Cancer Awareness Month, like ripples on the water we want to spread the word about kids like you and send love and hope to children with cancer and a message to the world that we all need to do more for our children who are now or might someday be battling cancer.

Support efforts to end Childhood Cancer forever and spread the word like ripples on the water.

www.samjeffersfoundation.org