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 targeted research 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.

John & Sabrina

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.  

www.samjeffersfoundation.org

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. 

In fewer than 3 weeks would learn that Sam was dying. Dying.

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. 

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