Ethen’s Fight… To Write His Own Story

Contributed by Wheela Sunstrom

If a two-year-old were capable of writing his story, what would he say?  Would he tell you his favorite colors? Would he reveal his favorite food? Would he describe his favorite outfit, his favorite toy, his favorite hobbies, his favorite book? Would he tell you he loves his brother and sister, and also his mommy and daddy?  The answer is a resounding YES.  He’d tell you all of those things, and probably much more.   But a diagnosis of Stage 4 neuroblastoma at only 18 months old changes all of that. If Ethen could put tiny pen to paper, his version would answer things like: Who is your favorite doctor? Do you have a favorite nurse?  What does it feel like to have cancer? Does chemo hurt? What about radiation What about the tests, the tumor surgery, the catheter,  the stem cell and bone marrow transplants, the antibody treatments, the intubation and the ventilators?   Are you afraid?  Do you love your brother and sister, and also your mommy and daddy?

Eighteen months.  Less time on Earth than a mobile phone contract.  Far too young to have to answer some of those questions. Too young to be burdened with these weighty concepts, to need the strength and knowledge of a superhero battling one of the cruelest villains in life.  And yet, a small superhero body does what it knows to do:  Fight.  His mom finds the silver lining:  It’s all he knows. It’s unfortunate, but it’s easier in a way. For Ethen’s family, this became all they knew too, the “new norm.”  Conversations and celebrations alike revolve around cancer. His parents fall just as easily into discussions about his diagnosis, his treatments, and his prognosis as they do the weather.  “Did you see that new show on tv?” seamlessly transitions to, “What are your worst fears?”

And those big, gigantic fears frequently have to take a backseat, sandwiched between milestones like birthday parties and learning new words. Because a diagnosis stalls you at first, then launches you onto an unfamiliar freeway, dumping you into a chaotic traffic jam of Wait-and-See with sporadic moments of Move, Now!  There’s often no time to consider anything else but what’s right in front of and around you. You begrudgingly tighten your seatbelt, then sit.

Most people see their lives in increments of extended time: 3 months. 6 months. A year. Families with a neuroblastoma diagnosis tend to have a very different range:  3 weeks.  6 days. An hour. Forget about family vacations and playdates. You’ll find those in the trunk, buried under the What Ifs.

There are also happy moments he would sprinkle throughout this tale.  An attention-loving, silly two-year-old would definitely say something about the fun things, the brighter things. Giggle fits, kissing attacks, successful steps, relieved anxieties. The new extended family made up by doctors and nurses and staff and supporters and other patients who provide a familiar comfort. These once-strangers who make the good days wonderful and the bad days less bad. After all, Ethen has become their child too.  They are all on the same ride, all wanting the same thing.

The ultimate goal? Kids like Ethen get to write their stories, their way. Without intubation and ventilators and antibody treatments and transplants and surgeries and tests and chemo. They get to spend more than half of the year somewhere besides a hospital, celebrating milestones. Independent, affectionate Ethen would tell about his favorite cereal, his favorite toy,  his favorite Mickey socks, his favorite bear, and his favorite book. The story wouldn’t revolve around cancer. Down the road, he’d share the experience of losing his first tooth: Did it hurt? Was he afraid? He’d definitely talk about the fun things, the brighter things.  And he’d certainly say he loves his brother and sister, and also his mommy and daddy.

This is why we do what we do. Because these are the stories children should be telling – the stories they want to tell –  not the ones they have been forced to tell.  Our mission to help shape these narratives is clear, and we won’t stop until they are all happily-ever-afters.

His favorite colors are blue and yellow, by the way.