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

Oct 19, 2014

One Year

One year. The passage of time since Sam died means nothing and everything to me at once.

For an instant I can capture the memory of Sam’s last moments as though they happened yesterday, yet I feel like I’ve been living without him for a very long time.

That Sam is gone at all still leaves me stunned, yet there are times when I can scarcely believe he was ever here at all.

On the one hand I am devastated and immobilized, on the other even I am dumbfounded at my ability to continue to live this life.

Recently I was confronted with the idea of my own mortality. Like many women, I was called in for a second look after my annual mammogram. This was a first for me, and women don’t talk about this frequent request for additional images so I assumed of course that I had breast cancer. I assumed I, like Sam, would die of my cancer.

Now all this drama happened over the course of only 3 days but at some point while I was imagining my demise, weeping more than usual, and feeling really sick to my stomach, I realized that all of this distress I was feeling over the possibility that I might have cancer might mean that I actually want to live? Why wouldn’t I welcome an end to missing Sam? Why wouldn’t I feel relief that rather than decades without him it might be over over sooner rather than later? Do I like living? I thought about all of the work for kids’ cancer that I have yet to do. The foundation has only just begun. My surviving children deserve to have a mother after losing their sibling. My husband couldn’t lose a wife after losing a son. My parents. Oh the horror. To think my parents would have buried their eldest son, their youngest grandson, and their daughter. Have we experienced enough loss yet? Have we filled our quota?

Dare I also admit that in addition to desparately wanting to stick around for my family and to continue to advocate for more funding for childhood cancer research, I also like life? There I said it. For selfish reasons, I want to live. I love my family. I need more time with them. I love my friends. I want to do more hiking and backpacking. I love teaching (yes, I am teaching again. Different story for another time). I like my post-apocalyptic TV shows, movies, and books (but I don’t have cable, so PLEASE don’t spoil The Walking Dead for me).

But it has been a year, and so John and I have been thinking about what to do to mark this date. It would be traditional for us, as Jews, to unveil Sam’s headstone at this time. We can’t because in true Edelson-Jeffers fashion we 1)Procrastinated, and then 2)The process of ordering the headstone did not go so smoothly. So this weekend, while Ben was home for a visit, we went to Sam’s grave and laid stones on the temporary plastic and metal marker, and spent some time. Tomorrow we will again visit Sam’s grave and place stones (and a pumpkin), and we will spend time working on Sam’s vegetable garden.

Before Sam died it was a wish of his to grow some food-any good chef wants fresh produce for his cooking, so last summer we planted a garden. He got to see it sprout and grow, and he lived to taste the carrots and tomatoes. He died before the corn was ready.

I didn’t plant this year. What would be the point? I guess the point is that it was something he loved, and we honor his memory by continuing the tradition even though he is no longer here. So even though it’s Fall, in this part of California it rarely freezes so I think we’re pretty safe to amend the soil, plant the seeds, erect the fencing(to keep Chance from digging it up, because you know, he wants to), and dedicate the garden to the little boy who loved food and cooking (and eating).

Sep 13, 2014

All it takes is a Community

John and I would like to thank everyone who supported the Lemonade and Love for Sam Luau last weekend…all of you who helped organize, set-up, run a stand, or clean-up; or who donated time, money, and energy to this great event—Thank You!!! I don’t know how many people ended up coming, but it was a lot. We raised a lot of money (still being counted) and a lot of awareness for the childhood cancer cause….and we couldn’t be more proud of everyone who participated and contributed and helped make this happen. Many of you came from near and far to be a part of it and we want you to know that we appreciate each and every one of you and all of your efforts!

Speaking of raising awareness and money for childhood cancer, for the last few months John and I have been working on setting up our own non-profit charitable foundation. We are proud to now be able to announce that the Samuel Jeffers Childhood Cancer Foundation is a reality! We received our Letter of Determination granting us 501-c-3 tax exempt status from the IRS on Tuesday this week, culminating several months of paperwork and some deep thinking.

We thought long and hard about the pros and cons of forming our own Foundation. We are aware that there are many other such foundations—often formed by families just like ours, who have lost a child to cancer. And we are aware that we are perhaps contributing to the problem of having too many organizations spread too thin to do much good. We seriously considered just concentrating our efforts on only one or two childhood cancer organizations, so that we could have the most impact with our limited resources.

But in the end, we decided to move forward with Sam’s Foundation (whose tagline is “Cooking up a Cure for Childhood Cancer”) because we would like to make an impact on a somewhat narrower—but desperately in need of help—segment of the childhood cancer landscape.

One of the most pressing problems with childhood cancer is that childhood cancer is not just one disease. There are many different types and many more subtypes, each one requiring specific and unique research to develop the best method of treatment.

While we have (very thankfully) been successful at treating certain types of pediatric cancer—thanks to increased awareness and a modicum of funding—the success rates for many of the other types of pediatric cancer are not good. These rarer types of childhood cancer are not so rare when viewed as a whole, as together they account for a good portion of all childhood cancers. Because so few children are diagnosed with these specific rarer types, little research is done on each one separately.

A sort of “vicious circle” therefore exists with respect to most types of pediatric cancer: They are rare enough that little awareness exists and very little or no research is being done; therefore no new drugs or therapies are developed; therefore children affected by some of these types of cancers are sentenced to almost certain death. No child should ever have to face that kind of future. We hope Sam’s Foundation will be able to make a positive impact on some of these rarer types of children’s cancer.

Having our own Foundation doesn’t mean that we are abandoning Alex’s Lemonade Stand or St. Baldrick’s. On the contrary, we will continue to support these great organizations and their missions to end childhood cancer. They are doing great work and they continue to run “lean and mean” in the fight against kids’ cancer, by holding their expenses down and contributing an above-average amount of donated funds to directly support children’s cancer.

We will partner with these organizations where we can and fund our own research projects when feasible, and together we hope to make an impact that will change the lives of children forever. And we thank all of you for helping us in this mission.

Here’s a sampling of the community that made this event happen.

Jul 28, 2014

Gratitude

I’m not good with words, and even if I was I can’t identify what I’m feeling now-except for the gratitude. Gratitude that my husband and teenage children would come all this way with me and be in this awkward position of sharing our tragedy with the world when the three of them are such private people. I think they thought this this going bald fundraiser was all mine, but really it’s ours. It’s taken the combined effort of our little family, our extended family, our friends, our friends’ friends, and strangers.

I am grateful that John and Ben and Abby came along with me to Boston. They’ve met a flood of people from various eras and experiences in my life. Those people have taken pictures of Ben and Abby and John, they’ve hugged and shook hands, and probably looked at them with sad eyes, and I know it’s been overwhelming and uncomfortable.

And let’s talk about those people who came to support us yesterday (or the folks who couldn’t come but donated to St. Baldrick’s, and the ones who sent messages of love, or those who are holding down the fort back home by caring for our pets, and taking in our mail). We were carried along yesterday by our extended family who traveled from the Albany area and Alexandria, VA to Boston to love on us, my high school friends from Connecticut, Maine, and the Boston area, youth group and camp friends drove from as close as Medfield, and flew from as far as Chicago.

I am flabbergasted that these people are still with us, physically and emotionally. It’s not just donations that prove they are still with us. Although that evidence is irrefutable to the tune of over $14,000. They didn’t turn and run when Sam was diagnosed. They didn’t shut down when Sam died. 9 months later they are still here with us and they say his name and share their stories of Sam. Even if they’ve never met him, they have stories of their kids playing a game because Sam would have liked it, or memories of photographs I posted.

What’s huge to me is that many of them have taken this cause on as their own. Their perspective on childhood cancer has been altered. They no longer think of it as a rare but highly curable (90% a sign on the T read) childhood disease. Sam’s illness and death touched them in such a way that they now feel compelled to tell his story to their friends and family. Yes, they shared my 46 Mommas fundraising link on Facebook and retweeted my tweets, but they’ve also held fundraisers at work, and their kids have donated birthday money. We’ve broadened the circle of awareness, and as we increase our reach, we raise raise more money, and ultimately I hope that we become impossible to ignore.

I am also grateful for my bald head. It may not be evident if you only know me through the internet, but I am a bit of a quiet person. It is my hope that my shocking appearance (along with the button-“Ask me why I’m bald.”) will prompt people to start a conversation with me (I’m quiet, but once I get started talking, I think my friends will attest, I’m a talker). It is also my hope that if people are simply staring at my bald head that I will have the courage to ask them, “Are you wondering why I’m bald?”

May 11, 2014

Flicker

You’ve probably noticed that I don’t write much anymore. It’s not that I don’t have plenty to say. It’s just that most of what I need to write about is not mine to write about. The teens have big struggles and that’s what’s hurting the most right now. But they are teens, so I won’t share their heartache with you. That’s their job, if they choose to do it.

Sure I have plenty of fall-out of my own, but much of that is already so well spoken about some of the other bereaved moms I know (Phyllis Sommer and Libby Kranz to name a couple).

And then there’s the mundane fall-out that most, if not all, cancer families suffer-Money. The result of my extended leave of absence from teaching is that the district has elected to release me. I was told I could reapply for my job. I certainly could have applied for employment with other districts. I chose not to. I don’t have the energy to sell myself to anyone at the moment. I don’t know if I ever will.

There is also the issue of the spark. That little, bright light inside of a teacher that pushes them to teach. The drive that urges a teacher to continually return to a job that doesn’t offer financial rewards, provides endless frustration, but still manages to feed her soul. My passion for teaching, the thing that made it feel like I never worked a day in my life, is lost. I think I know exactly when it happened too-May 29, 2013-the day we were told there was no hope. The bright little light inside of me was extinguished. It didn’t fizzle or sputter. It didn’t grow dim. It disappeared.

Around the turn of the year, a time when it would have been quite logical for me to return to the classroom, I began to worry about that spark. I looked for it. I felt for it. I decided to give myself more time, and John decided to support me. Given that it was also around this time that most of my income began to go to pay the sub, this had to be a joint decision.

After a couple more months without even a flicker from my spark, I realized that there was another spark, a different passion. I’d been taking care of these kids who are hurting so badly. I’d become a part of a community raising awareness and raising money for childhood cancer causes. So it’s not that my light had gone out, it was relocated. My drive was repurposed to my family and a cause.

Before I learned that my contract would not be renewed, I decided not to fight this new arrangement of my light. I also decided that if my contract was renewed for the fall that I would give teaching a chance.

I thought it was possible that upon my return to the classroom that my passion for teaching might be unearthed-by being there. By doing it. By the kids. So essentially I left the decision of whether or not I should still be a teacher up to the universe.

The universe has cast its vote. My emotional energy belongs first, here at home, and second, with childhood cancer. I am not afraid to work hard at whatever job I find to pay the bills (Go Cal!)-I don’t want a free ride. I don’t want to take it easy. I just have to keep my priorities straight: Keep the family going, make the world a better place, pay the bills.