Author: Sabrina

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

May 29, 2016

05 29 2013

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.

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.

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.

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.

Apr 02, 2016

April 2, 2016

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.

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.

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.

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.

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.

Oct 20, 2015

October 20, 2015

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 samjeffersfoundation.org.

Thank you so much.

Sep 01, 2015

Ripples on the Water

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.

samjeffersfoundation.org

May 29, 2015

Crappiversary

May 29th.

Two years ago today we learned that Sam would certainly die from his cancer in days, weeks, or months.

From September 20, 2012 until May 29th, 2013 we believed that Sam would survive for years, maybe even grow to be an adult-graduate from high school, go to college, find a career, find love. The point is, we had hope. We knew cancer created all sorts of obstacles and bumps in the road. We knew there would be symptoms to be managed, treatment that would cause short-term and long-term side effects, we knew he would be sick sometimes. We never imagined he would be dead within 13 months of diagnosis.

That’s the significance of May 29th.

I wanted to express here what a difficult time of year this is.

School is wrapping up and proud parents are posting pictures of their children as they graduate from preschool, kindergarten, elementary school, middle school…and so on. There are awards ceremonies where your child is recognized for their achievements in math, their progress in reading, or their kind heart.Today our own elementary school hosted Muffins with Mom. Moms had breakfast with their students before school and are sharing photos of themselves posing with their young ones.

Your children are precious and beautiful. I’m glad you cherish them. Don’t stop sharing, but understand that it hurts me. It’s not your fault. There’s nothing you can do. This is just the way it is. I am not OK and that’s OK. I may have unfollowed your Facebook page in order to spare myself the relentless bombardment of happy, proud parent posts, but don’t worry, we’re still friends.

So, it’s this time of year: school ending, and May 29.

You know, last week was Abby’s birthday. Sam wasn’t here.

Two weeks before that was Mother’s Day. Sam wasn’t here.

We went to visit Ben at school. Sam wasn’t here.

Sam’s birthday was April 2nd. He would’ve been 10, but he wasn’t here.

We could look to the future. Any time to breathe there?

June 1st-Dad’s (Poppy’s) birthday. He’ll be 88. He outlived his 8 year-old grandson. What’s that like?

July 4th-My birthday. I’m grateful to have one, to be alive, but Sam won’t be here.

Late July-We travel to Upstate NY to see family. 4 plane tickets instead of 5 because Sam won’t be here.

The experts are telling you to be extra gentle and loving with your bereaved-parent friends 2 days a year-The day of their deceased child’s birthday, and the day their child died.

I want to say-That’s a LIE.

Instead I’ll be diplomatic and say-That’s an oversimplification.

The year is full of difficult times. I anticipate the anniversary, the birthday, the holiday, the event, the trip with dread. I experience the day with sadness, tears riding right at the surface, anger stewing and coming out in bursts at all the wrong times with all the wrong people. Then afterwards I feel like I’m hungover, but I never had the good time that’s supposed come before. These rough spots with their build up and recovery never really allow for any space between them.

The year is full of these grief mines-these things that set us off. In fact, life is full of grief mines-They are everywhere. I’m not suggesting that you tiptoe around us and handle us like delicate china. Maybe just be open to the idea that even though I look OK on the surface and we’re not anywhere near Sam’s birthday or the day he died, I’m probably feeling crappy on some level.

I don’t know if there aren’t any dark days.

Apr 02, 2015

Forever 8

Today, April 2, 2015, we will celebrate what would have been Sam’s 10th birthday—if celebrate is the correct word to use. Perhaps honor would be a better word. Whatever words there are to describe the situation, they all fall short. There are simply no words that can adequately describe the emotions felt by a mother or father who has lost a young child. We miss Sam terribly. We miss his smile, his laugh, his charming disposition. We miss everything about him.

We will never know exactly what kind of person he would be today, what he would look like, what he would sound like, what his interests would be. We can guess, but we will never know. For us and our memories of Sam, time has frozen. Sam is Forever 8.

In the last year, we’ve done many things to honor Sam: We planted trees. We dedicated a bench and library corner at his school. We collected $2600 in coins from his former school mates. We held several little Lemonade Stands and one really big Luau. We collected sneakers Sabrina shaved her head. And we started a Foundation in his name, which raised enough money in its first partial-year to allow us to donate $5,000 to an important childhood cancer research project—Project Violet—in his honor.

All these things may seem little by themselves, but together they add up. It’s all a part of our mission to raise Awareness of the problem of childhood cancer And as you’ve heard before, we believe that Awareness leads to Funding which leads to Research and ultimately Cures for our children.

Tonight we will go out to eat at Denny’s to celebrate and honor Sam. No, Denny’s is not normally what comes to the top of one’s mind for haute cuisine, but it was one of Sam’s favorites. Like everything else, Denny’s was a part of the fabric that wrapped our family and made our kids, especially Sam, happy. If there is one thing we’ve learned since Sam died, it is to embrace the little things in life; the things that make you happy, that put a smile on your face, that bring your family together. Cooking a meal together; a trip to the beach; a visit to the neighborhood playground; lunch at McDonald’s; a walk on the Bob Jones Bike Path or at Oso Flaco. Together time—embrace it, cherish it, hold on and don’t ever let go.

We would like to thank everyone reading this that has played a part in our lives over the years. All of you, in so many ways, have made our lives more fulfilling and helped—if even a little—to fill the gaping hole left in our lives after Sam passed away. We would like to extend an open-ended invitation to anyone, everyone, to visit Sam at his resting place someday. He is at the Los Osos Valley Memorial Park, in the Jewish section of the property. Bring a small rock and place it on his headstone. And help us in remembering and honoring the little boy who loved life and loved people.

Happy Birthday Sam.

John Jeffers, Sam’s Dad