What My Son’s Final Words Taught Me About Happiness
By: Erin Benson
Tags: Happiness, Loss, This Is Us, Cancer, Grief

Exactly one week earlier, Mike had received a grave phone call. We were standing in the kitchen, and I watched his face transform, heard his voice shift into an octave consistent with bad news. The air in the room morphed; the energy suddenly illuminated, screaming for action. I searched Mike’s face for clues, listened to the few words he spoke, attempting to uncover what had happened and who it had happened to. Mike said goodbye to the mystery caller, and I steeled myself for the news, assuming it was related to our tragedy, to our grief. I was wrong to assume.

“Craig’s dead,” Mike said, flatly.

Craig was one of Mike’s best friends from high school. He had been found in his office with what looked to be a self-inflicted gunshot wound. The kitchen remained silent and inert for a few moments as this new, horrifying reality settled, weighty and uncomfortable, into the room. The shockwave reverberated in our bellies.

“We have to go,” I said, breaking the silence. “You have to be there.”

We quickly rallied family to watch Ada and Mae, our two-year-old twin daughters, and immediately purchased three plane tickets to Florida to attend the funeral. But immediately after securing our flights, a voice in my head sounded a warning: Sam’s symptoms were getting harder to ignore. His energy levels crashed frequently and unexpectedly, his speech slurred, his eyes lost focus. He’d often scream out from his bedroom in the dark hours of night as if a ghoul had come to snatch him from his room, from us. I’d rush into his bedroom, breathless but knowing I would find Sam alone, still asleep.

Night terrors were his first symptom prior to diagnosis. They had gone away following treatment, but now, they were back. A flight could lead to increased pressure in his brain. If his tumor was progressing, a cross-country trip could be catastrophic, even deadly.

We decided Mike would travel to the funeral alone.

The days following that phone call merged into a hazy series of interactions, sights, sounds, and smells punctuated by knife-like realizations.

The morning Mike left, I received a phone call from a pediatric neurosurgeon at the Mayo Clinic. After reviewing Sam’s case, he believed there was a chance Sam had been misdiagnosed. He wanted to do an MRI.

The phone call was unwelcome and unbelievably frustrating. Most kids with DIPG succumb within a year. Sam had survived more than two. We had encountered several doctors over the years who assumed Sam had been misdiagnosed, each thinking they knew better than the last, each encouraging us to subject Sam to risky and traumatizing tests to assuage their curiosity, and each time living through the reconfirmation that Sam’s case was hopeless. Often I even found myself comforting the doctors at these appointments, distraught they had it wrong, that Sam did, in fact, have a terminal illness.

After the call from Mayo, I attempted to weigh the risks of satisfying this doctor’s curiosity and my own desperate desire for a different diagnosis with the mission we had set upon two and a half years earlier—to make Sam happy. Sam’s unstable condition meant that even putting him under anesthesia for an MRI could be life-threatening. But what if this doctor would see something new, something the others missed, something that indicated Sam would survive? I called Sam’s neuro-oncologist in South Carolina. I called his neuro-oncologist at Children’s in Minnesota. I called his hospice nurse. I called the neurosurgeon at Mayo. I asked them to organize a conference call, compare notes, and get back to me with a recommendation.