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 www.samjeffersfoundation.org

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. 

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 Banker

Future Engineer

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!

Future Chef

Future Scientist

Thank you so much for your continued support.

John Jeffers

www.samjeffersfoundation.org

Cooking Up a Cure for Childhood Cancer

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.

September 2012, CHLA shortly after diagnosis

Four months and 22 days after May 29—our second D-Day—Sam died.  Crash.  D-Day #3.

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.

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. 

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 doing so is very likely to have “spillover” benefits elsewhere in the broader fight against all cancers.  Let’s take just one example.

Project Violet is 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 called Tumor 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

www.samjeffersfoundation.org