When We Knew Our Boy Was Slipping Away

We were so worried about surviving that we’d forgotten to show him even little ways to live.

Everett had a week left to live, and yet we’d rarely felt so hewn to hope, as if our denial of his looming death were a drug coursing grand mirages in guise of a miracle. His phase-one trial at St. Jude Children’s Research Hospital in Memphis had been approved earlier that day, and Rett beamed as we filmed him rollicking in his activity center, from where, we were fond of saying, he controlled the whole of our universe. “We’re gonna move to Tennessee for a while,” Deana exclaimed, Rett’s attention now upon a stray orange block. “Exciting, right?”

In spite of what his doctors had told us days prior, that the lesions had almost surely spread from liver to both lungs and likely elsewhere, despite their insistence that anything more than making his waning weeks as warm and calm as possible was a futile cause—we believed in our ten-month-old boy as the devoted do their deities: transfixed forever on the magic beyond what our eyes plainly see.

The death of a child is at once traumatic and transformative, rewiring your life in ways you never fathomed. It fundamentally changes how one lives—with the past, for the future, and in the world itself. Watching that video now, seeing his hollow eyes feign fleeting joy, I marvel at how wholeheartedly we felt he had a chance, how easily our minds turned curses to runes and glaring fact into fodder for the impossible. Everett would succumb seven days later, breathing his last earthly air lying in our bed, in between the two of us, at a sunset we only later learned was his own ascendant fire. Over the four preceding months, we ricocheted between helplessness and faith, futility and jagged resolve, battening down and giving in, smothering chaos and a far too faraway god. In a way, nothing has changed. Save, that is, almost everything—lost jobs, found causes, a sea-eyed sister harkening him in every dimpled smile.

*

Deana’s parents drove us to Manchester for our flight to Memphis the following Monday. Tom and Marsha had been hospital mainstays since the second their only grandson was first admitted—sitters for our infrequent dinner dates, pet minders between, unfailingly loving in-laws always. And they were as diamond confident as Deana and I, driving west down New Hampshire’s 101 on a frigid February morning, that Rett would be the gleaming one-in-a-thousand smile on St. Jude fliers; that winter might quickly wane and azaleas bloom for ambles down Beale Street, Rett’s feeding tube replaced by handheld pouches and hair, at last, sprung in sandy wisps; that Tennessee would deliver us from evil and yield salvation.

Arriving early to modest crowds, the four of us took turns strolling Rett through the first-floor ticketing lobby. His mood had become markedly more pensive, a result, we surmised, of the nervous energy charging the journey ahead. There was still the intermittent slaphappy spasm, announced with requisite balloon-cheek grin that seemed to make the feeding tube disappear. It’s what we prayed his Grammy and Grampy remembered as they bid us solemn goodbyes outside the security queue: their grandson stubbornly charging like an undefeated matador, blood-blinded but smiling. Deana and I watched them descend the escalator and out of view, certain we’d see them again by March.

*

The subsequent flight unfolded in a restless blur: Rett unwilling or unable to sleep; tools of distraction largely ignored; Mom and Dad growing gradually more aware—and wary—of the gravity our landing would bring. Just prior to descent the pilot announced a considerable storm had moved in on the region, and though he assured a safe arrival, delays to the gate were likely. Coming from the winter we had, of blizzard after blizzard ensconcing in snow our already frozen lives, the impending hassle hardly registered, absent how Rett would handle the wait. Deana nursed him while the plane staggered down and the flurry-shrouded lights further defined the city below.

Though jarring, touchdown roused little reaction among the passengers as the plane taxied towards the gate. But the plane soon stopped, owing to excessive ice on the runway. There were buses ready to fetch everyone, the captain said, but they were likewise stalled in their tracks. Our high morale suddenly soured, Deana and I apoplectic at the rotten luck as Rett’s quiet coos delved into restive whimpers. At some point, Deana calmly flagged an attendant. “I’m sorry, but we’ve been traveling all day and we’re trying to get to St. Jude,” she implored, stopping short of saying what Rett had only because the pale narrow face and plastic tube cast in clear relief what words might’ve hammered home too hard. “Is there any way we can get to the terminal?”

Minutes later we were shepherded down the aisles—one or two heartfelt good lucks levied from the rows—to a set of airstairs rolled out no fewer than two hundred yards from the closest gate. I cradled Rett as Deana and I thanked the crew and stepped through the hatch into the piercing rain outside, scaling the grated stairs at a geriatric clip. We entered the terminal’s near-empty arrival port to find a St. Jude shuttle idling on the curb. Our driver, a fifties-ish parka-cast woman named Betty, promptly introduced herself, and we ourselves in turn, as she helped us offload into the van. Rolling through the terminal into the sleeting outskirts of Memphis we commenced the expected brand of time-killing conversation. “Where y’all comin’ in from?” Betty inquired, oldies R&B jangling gently through the speakers.

“New Hampshire,” I said.

“Oh, so you’re used to this then,” she quipped. “They’re sayin’ it’s the worst winter storm we’ve had in thirty years.” I’m tempted to namedrop climate change, go off on some twenty-second soliloquy about one necessary byproduct of a warming planet being more extreme cold in places unaccustomed to snow and ice—like Memphis, you see.

“I’m amazed our plane landed at all,” I said instead.

“And how was Everett on the flight?” Betty asked into the rearview mirror.

“He was a good boy,” Deana chimed from the back. “All things considered.”

“Hmmm, I know,” Betty sighed, in that seldom encountered way that makes clear they really do. “They’re gonna take good care of you over there.”

At the hospital entrance I took a photo of Deana and Rett standing beneath the imposing St. Jude statue, proof we’d been formally received—whether because of our trials or in spite of them, and whether or not our cause was indeed a lost one—into this place of last and lasting hopes. Being nearly ten p.m., the concourse was empty save for a smattering of personnel, including the lone attending registrar tasked with checking us in. Deana filled out the paperwork while Rett and I shuffled between the various wall hangings, naming all the animals we could find, his attention rapt and unblinking. We were then fetched by an RN for the necessary vitals, a policy we didn’t bother to try and evade, even given the hour, having long ago learned such pleas were always in vain. As usual, Rett was fussiest for the measurements, which by dint of its frigid sterile steel seemed so needlessly cruel, as if calibrating a washable cloth for tiny cancer patients were too onerous a hassle. Still, we were heartened to see Rett’s height and weight unchanged from our last trip to Dana-Farber, despite a face grown gaunter around steadfastly intrepid eyes. We just needed to get him eating solid foods, we thought, and the weight would follow, believing this sojourn one wherein a real routine might finally take root. Maybe we’d try giving him applesauce or avocado from the cafeteria tomorrow. Let’s see how he does tonight, his first in his new home.

Another shuttle escorted us from the main building to Tri Delta Place, one of three family living quarters on the St. Jude grounds. We were told during our preliminary check-in not to read into our apartment being for short-term stays; that they’d move us to more permanent lodgings once a formal treatment plan had been established. All of which sounded eminently reasonable, earnest as we were in our quixotic illusion and absent sense of what was to come. Shuffling into the building’s main lobby, seeing our fellow cancer families enjoined in their evening wind-downs, one could forgive us that mistranslation; this was clearly where we were meant to be, albeit in spirit and sentiment more than circumstance.

*

Our first appointment was at eight a.m.—a dose of antibiotics to stave whatever might’ve been circulating the plane. In warm contrast to the deserted quiet of the previous night, we arrived to find the hospital pulsed with activity as patients and their families traversed the maze of halls threading the sprawling compound, cobbling their own paths towards a miracle. Some were kids far sicker than we’d seen and known in Boston, older than Rett but with the telltale tubes and swollen faces of too many chemo rounds, parents shepherding them along with equal parts resignation and resolve—the former out of fear of final goodbyes surrendered to unhearing ears; the latter, our hardwired bent to never know that only death will reunite you with your child. Others you wondered why they were even here at all, such was the fullness of their vitality. Having to navigate that sense of bifurcated fortune, of scanning any room and knowing some you see will be cured and grow up to have children of their own and die asleep at ninety while others won’t see another week, was but one of a thousand feelings we learned to wish on no one.

We killed time in a playfully painted waiting room Rett was too young to fathom, though the shimmering fish tanks provided diversion enough. Our nurse that morning was a Memphian named Mark. Rett took to him immediately, charmed perhaps by his tropical-themed tunic and measured southern drawl. I asked Mark for his best barbecue recommendations while he changed Rett’s port dressing, about how walkable the city was and where to go once the weather turned, inquiries he met with counsel as thoughtful as it was firmly warning. “It’s pretty rough once you get outside the compound,” he said. “Downtown has its nice parts—or its touristy parts anyway. But we’re kind of an oasis here.”

“Are there any buses downtown?” I asked

“We have a shuttle that goes to Kroger and Walgreen’s,” he replied half-sarcastically, “Which, after you’ve been here awhile, is about as much of an adventure as you want.”

Rather than take turns holding Rett, we commandeered one of the hospital’s ubiquitous plastic red wagons, padding the sides and back with pillows to prop him upright. Though we’d given him a toy or two, Rett was as always much more enraptured by the surrounding human scenery, a fascination cultivated over many a midnight stroll through Boston Children’s. We spent the next hour traipsing the halls ahead of our meeting with his primary doctor, Stephanie Park, who would apprise us on the specifics of Rett’s forthcoming treatment.

She was younger than we’d expected, an observation doubtless drawn from our believing Rett’s condition warranted the wisest possible minds—as the moms and dads of all conditions invariably do. Pleasantries traded, her soft-spoken manner soon yielded to a stout authority as she primed us on the protocol ahead. We would need to give him another CT scan, she said, to determine whether and to what extent the lesions might’ve spread, after which we would sit down to determine the best course of action. As ever, Deana had done her homework. “If he’s eligible, he would be the youngest to go through the trial?” she inquired.

“He would be, yes,” replied Park. “That’s why we need to make sure he’s healthy enough to handle it.” She then turned her attention to Rett, who, in spite of a restful night, seemed unusually lethargic. “So he was receiving antibiotics in New Hampshire?”

“We took him into Wentworth-Douglass maybe a week ago when he was running a fever,” Deana answered.

“And did they say what might’ve caused it?”

“They didn’t know, no.”

“And how is he handling things so far?”

“Really well, all things considered,” I interjected. “He slept great last night.”

“Good,” Park said as she leaned towards Rett to gently brush his chin. “So we’ll set up a scan for tomorrow. You’ll get a confirmation call from radiology as soon as they have a time. In the meantime definitely get some food. I know it’s hard, but try to relax for the rest of the day. I think it might even be warm enough for a walk if you bundle him up.”

Heeding her advice, we made our way to the cavernous but brightly lit cafeteria, live piano music fluttering around and above the din of the lunchtime crowd like buoyant birdsongs in a thaw. Afterwards, we traded our red wagon for Rett’s folding stroller and made the quarter-mile trek back to Tri-Delta, temperature begrudgingly creeping to forty amidst an almost cloudless sky. It had been months since Rett had known an outdoors walk, and as with so many respites he’d come to barely know, his stoic silence signified the loudest of joys.

During the ensuing nap I borrowed a ball from the front desk and tooled around on the patchily frozen Grizzlies-themed half court near the building. The game had always been a sanctuary—a worship of spheres in a church built by angles, bounces and swishes and clangs the staccato bursts above a rhythmic inner hymn. And to the unbelieving passersby it must seem a fanatic ritual, indeed, these jumpers and twisting turnarounds over phantom defenders as spasmodic as speaking in tongues. A thirty-minute mass, however cold the nave, is plenty to jar the blood; that basketball could once again become a daily routine, spirit-stirring in full.

*

Rett spiked another fever around bedtime, prompting us to weigh returning to the hospital before deciding instead to see how he fared, lest we disrupt the day’s imagined momentum with measures we knew would likely be futile. He seemed especially restless that night, requiring regular pats and shushing over the omnipresent waves of his ocean sound machine. By next morning his temperature had risen north of 102, lassitude now noticeably manifest in hollowed eyes and labored breaths. We supplemented the Tylenol with a small dose of morphine, prescribed upon our dismissal from Boston Children’s Hospital and dispensed only a handful of times since. As ever, the sedative effect was near instantaneous, a fact that elicited from Deana and me a twinned sense of relief and guilt, though the pressing circumstances couldn’t help but temporarily bury the latter. Plenty of cancer kids need morphine, we thought, not knowing—or anyway, not wanting to know—the ends to which many of those plenty were slowly being pulled.

As a precaution, we headed to the hospital straightaway, two hours ahead of the scheduled scan. Mark, our nurse, rechecked Rett’s temperature to find it slightly lowered, recommending we wait to give Rett more medication until prior to the scan. In the interim we propped Rett up in a wagon and wheeled him around the hospital, stopping at a Starbucks kiosk for coffees and a snack. Among the edible loose ends was an assortment of fruit smoothie pouches, which struck me as one vaguely-solid food Rett might be willing to try. While idling in the radiology waiting room, I twisted off the cap and squeezed a drop in his mouth. His eyes, previously tired and wan, instantly lit up like warning flares. Watching Rett experience that bliss, ephemeral as it felt, I wondered why we’d waited so long to try, why we’d avoided giving him something that wasn’t milk. We were so worried about surviving—whether a year, the week, or an hour—that we’d forgotten to show him even little ways to live.

Normally, Rett would’ve been anesthetized; the process had become so rote we merely took it for granted. But the radiologists insisted on seeing if he could lie still enough to produce an accurate scan. The last time we’d tried this, late in our stay at Boston Children’s, Rett lasted all of thirty seconds before flailing his objection, and nothing about his mood or condition suggested today would be any different. Handing him his toy ambulance, we kissed his forehead as the tray inched its way into the chamber. Donned in X-ray vests and stationed a good twenty feet from the machine, Deana and I watched as Rett methodically spun his toy’s plastic black wheels—The Inspector, we’d come to call him—without so much as a whimper or whine. Maybe it was the meds. Maybe he was older, or more patient, or had simply grown accustomed to the endless prods and hassles of the caring machine. Whatever the reason, when the scan was complete less than ten minutes later, we celebrated like he’d scaled a baby milestone, mainly because we couldn’t remember the last one Rett had known.

Rett’s temperature remained high, his demeanor having withered somewhat since the scan. He only seemed content when we were holding him, nestling his head in whatever crook of our body he could. It had been a whirlwind few days, we agreed, upheaving enough to quake the composure of any ten-month-old, let alone one battling cancer. This time through, the cafeteria piano sat empty, lending the lowly echoing drone of voices the choral onus of an ancient play. I remember scanning the tables and noticing just how profoundly sad the faces seemed, despite the occasional smiling face from those that had the fairest excuse to never do so. On the whole, however, the emotional panorama seemed hammered in black relief against the colorful Disney charm St. Jude tries so hard and earnestly to foreground. Faces that all knew, or at least crossed the thought, that this might be the last place they’d see their child alive.

After a few more loops around the halls, we checked in for our meeting with Dr. Park. Rett was nearly asleep in Deana’s arms, something he hadn’t done since infancy, restless movement accompanied by an intermittent moan. Dr. Park observed him intently and we could read into her near-welling eyes the brunt to come. “We’ve reviewed the scans,” she began, her voice hardly above a whisper, “and based on the severe metastasis of the tumor, we don’t think Everett will be able to survive the trial.”

That familiar soul-drowning adrenaline coursed forth as if roused from dormancy, heart shocked so hard you can feel it beating through the instant weight around you. Deana and I looked to Rett for some kind of refutation, a sign his eyes had room enough for hope. What we saw, for the first time and its own imperative terms, was a dying baby boy slowly slipping away.

“Can we take him home?” Deana asked, her voice cracking as she cried. “Do we have to stay here?”

“You can take him home,” Dr. Park said. “We’re trying to schedule a medical flight for tomorrow morning.”

“How much time does he have?” I asked.

“It’s hard to say. If it’s okay, I’ve asked someone from our palliative care team to stop by.”

We both nodded as we caressed and talked to Rett through mounting tears. He’d woken up somewhat, alerted no doubt by our distress. Eyes, once sapphire marbles, had begun to cloud and gray, his dimple-anchored smile sunken to a list. Dr. Park offered to show us the scans, a suggestion we declined, refusing to give the evil a face that might be remembered. She assured us she would be there to see us off the next day, giving us both hugs before departing and sending in the palliative specialist, a woman we soon learned had lost her teenage son to cancer years earlier. She noted Rett’s furrowed brow, claiming it was indicative of distress or pain and suggesting we administer morphine accordingly. Deana asked her how much time she thought he had.

“Not long,” she said as she stroked Rett’s cheek and chin, his eyes having returned to half-sleep. “A few days. A week at most. It’s good you’re going home. That’s where he should be.”

The day’s remainder unfurled in a fog: Phone calls to parents piecemealed through aching sobs; Deana and I huddling together on the couch like two lovers lost in a death-bearing blizzard; Rett sleeping for hours in our arms as the morphine increasingly took hold. Eventually, he was tranquil enough to lie in his crib, at which point we all did our best to rest. When Rett woke crying sometime after midnight with a fever of 104, his breathing grown stuttered and shallow, we thought for a moment we might be losing him—that he would die here, in this strange place a thousand miles from a home he must’ve known was there. A twofold dose quickly calmed him, after which he slept quietly, though for Deana and me the night lingered on like a pall.

He was much the same the following morning, caught between surviving and succumbing, his fever still well above one hundred. Things moved quickly once we arrived at St. Jude, beginning with a dose of antibiotics, through which Rett somehow mostly slept. Our full baggage gathered, we met briefly with Dr. Park, who accompanied us to an ambulance parked at the emergency entrance. We exchanged hugs again, Deana and I offering our sincerest thanks in the face of it all, knowing ours was far from the only family she’d joined on this heart-sinking walk. Ambulance personnel allowed all three of us to ride in back, Deana cradling Rett on the cot while I sat on the side during the subsequent twenty minutes to the airport. We were taken directly to a small private plane, where our pilot and two-man medical staff ushered us aboard the cramped confines for our three-hour flight to Portsmouth.

The sun shone unchallenged that day, refracting through the windows with blinding intent as we ascended over Memphis. We took turns holding Rett, who oscillated in and out of sleep despite the oxygen mask hovering always over his mouth, every short-lived stir leaving us to fear we’d never see those holy eyes again. Even then, in the edge-lit dim of a whirring airplane cabin, he was still so breathtakingly beautiful, with a cherubic countenance no cancer could touch—an unbeliever’s angel slowly preparing for Seraphim. And while his moans and stirs wouldn’t allow our nerves a rest, as the plane summited above all clouds and the sun deigned to grace a hell beneath, I couldn’t break the thought that, if he were to let this world go, there was no better place than halfway home.