Five Long Years

Sep 20, 2017

Five Long Years

Five years ago today we sat in a small Arroyo Grande (CA) hospital room, waiting to hear the results of what would be the first of many MRIs that Sam would have over the next year. After an initial visit with me and Sabrina, Dr. Young eventually came into the room where all three of us sat and told Sam that there was “something inside his head that shouldn’t be there”, to which Sam said: “Well, is it life-threatening?”  Dr. Young looked at Sam, seemed to conclude that this seven year old was perhaps wise beyond his years, and replied “Well Sam, lots of things can be life threatening, but we have ways to treat them.”  And Sam said: “Okay”.  Thus began a tortuous journey that culminated exactly 13 months to the day later—with Sam dying in our living room.

Over the past five long years, I have experienced the gamut of emotions from Sam’s death, and over the next five and beyond, I will no doubt continue to feel tossed around by the intransigent ups and downs that life after the death of a child brings.   Oddly though, I have come to realize that for me one of the worst of the emotions I’m plagued by is the fear that Sam will be forgotten.

I don’t know if this fear is common among bereaved parents.  I’ve only spoken about it, quietly, almost sheepishly, with one other bereaved parent I know. To my surprise, this mother confessed that she too feels the same way.  It seems that we are terrified that our child will be forgotten, and the thought of that screws itself into our brains and makes us even more morose.

I don’t pretend to know the psychology behind this feeling, this fear.  It might simply be a sign of some deep-seated insecurity that I myself harbor.  I only know that for me it is real, and though I’d rather not admit it, I must face the reality that it exists deep inside of me.

Perhaps then it should come as no surprise that when I see a new rock has been placed on Sam’s tombstone (yes I notice) or when someone at a fundraiser comes up and says “I remember Sam” or “My daughter is always talking about how she remembers Sam” or “My son was just telling me that he remembers playing on the playground with Sam”, etc., etc., it’s simply the best feeling in the world for this father. 

Maybe I don’t want anyone to forget Sam because I don’t want anyone to forget that childhood cancer is a serious problem.  September is Childhood Cancer Awareness Month, and so now, more than ever, I want people to know that every day 40 or more children are diagnosed with cancer in our country.  I want people to know that about 20% of those children will die within 5 years.  I want people to know that about 35% of them will die within 30 years.  I want people to know that even those that survive stand about a 75% chance of suffering from significant to severe complications later in life, from the treatment that was supposed to save them.  I want people to know that large pharmaceutical companies have no incentive to spend billions of dollars on a market they deem insignificant, and that the US government spends only 4% of its cancer budget on children and the American Cancer Society even less.  And finally, I want people to know that it currently falls upon us—the parents, grandparents, family and friends of the children diagnosed—to protect these children and help find safer, more effective treatments. 

This problem will not go away by itself.  But there is hope—real hope.  Decades ago things like chicken pox, rabies, TB, influenza, polio, HIV and many other diseases were known to be death sentences for those who contracted them.  Today, all of these have been either largely eradicated or at least greatly diminished in their power to take lives.  Awareness led to funding which led to research which led to cures.

I believe that someday cancer will be included in that list.  The answer will be found in research and through medical breakthroughs that come about from dedicated doctors and researchers who are given the resources to follow their life’s passion and do great things.  I also believe that we will eventually come to realize that money spent on adult cancer research seldom “trickles down” to benefit children, but that money spent on childhood cancer research can and does “trickle up” to benefit adults and society as a whole.  I also believe that Sam’s Foundation can play a key role in that discovery.

If I had only one wish today, on this fifth anniversary of my son’s diagnosis, it would be that his death was not in vain; that his memory will live on and inspire and empower ordinary people to do extraordinary things.  The Samuel Jeffers Childhood Cancer Foundation exists with the mission to do just that.  And I think Sam would be proud of that.

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