The dark hilly roads of our neighborhood have long been exercising my body and exorcising my mind. Always at my trademark 0-dark hundred hours, and often at the expense of rest, personal safety, nagging joints or common sense, I head outside eager for the moment when I’ll hit my stride: my feet strike the macadam in a soothing rhythm that eventually lulls my brain into a restorative place akin to the REM sleep I’m missing.
My goal is to be back just as or before the first sliver of dawn lights the horizon. The only companions I desire are the moon and stars. I relish the darkness and solitude of the predawn hours: the run itself is illuminating, often shedding light onto problems or difficulties at hand. Light from any other source – most often a passing car – is not only an intrusion, but often a hazard. Drivers whose headlights glint off of my reflective gear frequently flip on their high beams – perhaps to better see me, perhaps in a misguided effort to light my path. Whatever their intention, the presence of light temporarily obscures the adjustment my eyes have made to the dark. Blinded until they pass, kinesthetic senses must carry me safely over ruts and around obstacles no longer visible in the light, and deliver me safely back into the envelop of darkness.
One recent morning – the first of the holiday season and the last for Callen as a 5-year old – was poised for an excess of calories and emotion. A preemptive run was an especially good idea. And so I laced up my running shoes and readied myself for a pavement pounding. As I placed a gloved hand on the doorknob and silently petitioned the door and the dog to remain quiet, I heard it:
“M-o-o-o-o-o-o-o-o-o-o-o-m.”
I paused. I knew Jim had heard it, too – the monitor would be crackling at our bedside, as it had done hundreds of midnights and mornings and every hour in between for nearly 20 months. And I knew that he’d never fault me if I continued on with my run and left him to answer the call, for one of the truths we’d all come to know was that everybody's day was better when Mom started hers with exercise…
But I was up and dressed and moving and closest to Callen’s room, so I would field this one. I sprinted up to his bedside and was met with “My head hurts. My mouth hurts.” The latter was his most recent euphemism for nausea, so downstairs I went to prepare heat packs and Zofran.
He gulped down his drug cocktail, closed his eyes and snuggled against the heat packs. I turned on some quiet music and slipped out of his room, down the stairs, and out the door.
My legs and mind began to turn, though neither in an easy rhythm. This wasn't supposed to be happening. Not because it was a holiday (although that didn’t make it any easier), but because the timing was off. I’d already calculated this, and I did it again as I replayed the events of the last week.
November 19th: Callen had undergone his 22nd spinal tap and infusion of central nervous system methotrexate. He had received his monthly infusion of vincristine through his port. He’d sat in the “gas chamber” and inhaled an acrid aerosolized anti-pneumonia antibiotic. He’d started his monthly five-day steroid burst. Nothing unusual there (other than absolutely everything about that…).
November 23rd, 24th, 25th: Callen had received three more rounds of IVIG. For five hours each day he’d gotten infusions to combat his ever-persistent and disruptive parvo infection. His patience had been tested by the process, his vitals monitored by his homehealth nurse, and his learning tended to by his homebound teacher. Other than Callen’s cheeks flushing more than was customary, nothing unusual there (other than absolutely everything about that…).
But the nausea wasn’t supposed to be back. Not yet. It never returned this quickly after steroid withdrawal. And the headache? He wasn’t 48 hours from his last dose of IVIG, which was when the first one would hit. I’d done the math and this was the first of what should have been two golden, symptom-free days - and coincidentally, Thanksgiving and his 6th birthday.
Something was amiss. Quickening my pace and shaving two miles off of my route, I turned toward home.
When I blew through the door, Jim was hustling. Callen had already begun vomiting; the medicine I’d given him earlier now staining the bottom of the emesis basin. Soiled linens were being loaded into the washing machine. New heating packs were being warmed. Callen had been relocated to the downstairs sofa where he’d be in plain sight. The next wave of nausea and vomiting came. And the next. The pain in his head was worsening. He begged it to stop. He said he couldn’t take it anymore. He declared it too much. He stared deep into my eyes with an intense imploring look and pleaded with me to make it go away. I cupped his head in my hands, his tears pooling in my palms. And I promised.
New drugs were given. Pills to chew. Pills to swallow. Elixirs so bitter no amount of juice could hide them. Heat packs. Cold packs. Backrubs. Blankets. During a particularly violent fit of retching, a newly awakened Olivia walked into the den. She saw what she saw and heard what she heard and burst into tears. Echoing my earlier sentiment, she exclaimed, “This isn’t supposed to be happening!” And then added, “Why is this happening on Thanksgiving?” Callen, who up until this point had been too distracted to acknowledge the day, whispered to me through parchment paper lips. “Happy Thanksgiving, Mom,” he wished. And then he fell asleep.
It was only 8 am. There was still time to make that wish reality. Pausing only to console Olivia and have a small breakdown in Jim’s arms, I set about preparing the feast. My sisters and their families were set to arrive in three hours, which would allow the kids precious pre-festivity time to run off energy and the adults time to gather theirs. I updated them to say the morning had gotten off to a rocky start, and could they push their arrival time back by fifteen minutes? Surely that was all we needed.
The kitchen erupted into a flurry of activity. I’d been prepping ingredients for days so it was “simply” a matter of final steps and finishing touches. Jim and I made a game plan and divided assignments. All systems were go! We were back on track.
But only momentarily.
Callen awakened and immediately his little body began turning itself inside out. His headache was back with alarming intensity, the screams he emitted likely nothing compared to the sirens in his head. Jim and I considered our options: what drugs were left at our disposal? What had he kept in and down long enough to be active? What was his last platelet count – could we use another NSAID? How much anti-emetic had he probably absorbed? Was it time to call a “real” doctor? We’d been through the post-spinal tap, post-IVIG nausea / vomiting / bad headache routine too many times to count. Was this really any different? Or was its impeccably-timed arrival on a holiday morning adding an unusual element of intensity and incredulity? (As if a non-holiday Thursday would have somehow made this normal…because it so often was the norm…)
Uncertain of any answer, we made one final drug selection. I scooped up Callen into my arms and carried him to our room where he’d have more space to get comfortable and hopefully be able to “sleep it off”, and from where I’d be able to still communicate cooking instructions to Jim. Pillows were fluffed and arranged amongst strategically placed emesis buckets. A urinal was added as he could no longer stay upright long enough to get to the bathroom, although the need to pee was becoming less frequent.
The turkey was seasoned and rubbed. The stuffing was mixed. The sides were assembled. The ovens were heated to precise temperatures and timers were set. Callen’s brow was rubbed. A pill was stuffed down his throat. Every possible measure of comfort was at his side. His temperature was taken at timed intervals.
Holiday smells began to fill the house, overtaking the stench of vomit. We waited. We watched. We hoped. After all, how many times in the past week alone had Callen successfully fought off these same symptoms? Surely he would prevail again. We simultaneously prepared to stay and to go. There was so much to do, yet nothing we could do. Contingency plans were made for Olivia. Anxiety and hunger gnawed at us.
When Callen awakened a short time later, we knew beyond a shadow of a doubt. It was clear. It was time. And so at 11:11 – with four minutes to go until the arrival of our family – we sent out word. Turn around and head home. Await further instruction. We put in a call to the doctor, and awaited hers.
When the phone rang, I gathered my calm and fought the urge to burst into tears. Events of the past week were detailed. His spinal tap (which we knew had been difficult and bloody based on the number of holes under his bandage and the number of red blood cells resulted in his spinal fluid). His IVIG infusions (each of which we knew carried a significant risk of aseptic meningitis). His symptoms. His now-lethargic state. His complaints. Our concerns. We didn’t really need a third doctor to tell us to go to the ER, but yet at the same time, we did.
Jim swaddled Callen in a blanket, cradled him in his arms careful not to elevate or jostle his head, and laid him across the back seat of the car. I applied numbing cream to his port, knowing access and resuscitation was inevitable, and secured it with cling wrap. Callen cried. From the pain. From the disappointment. Out of fear. From knowledge of the destination. Would he still see his cousins? Were they going to play without him? He wanted to know. Where was Olivia going? Would he have to spend the night? What would happen to his birthday? Why couldn’t we make it stop? How much longer until we got there? Did we have to drive on the highway? Why couldn't we make it stop? He reiterated the latter more times than my anguished heart could bear. The tears and pleadings and questions poured out of him until, lulled by the motion of the car, he quieted.
Upon arrival we were ushered out of the general waiting area, the combination of leukemia and parvo an automatic ticket to the back. For the ensuing eight hours Callen was poked, prodded, accessed, drugged, rehydrated, reassessed. Through it all he lay nearly motionless, save for the doctors and nurses putting his body into positions and through maneuvers to evaluate his responsiveness -or lack thereof. We watched. We waited. We prayed. We cried.
Labs trickled in and an alarming picture began to evolve. His sodium level –one of the most tightly regulated systems in the human body – was dangerously low. Driven by the inflammation surrounding his brain, his command center was sending mixed signals to his kidneys. Repletion was begun, careful to let it occur neither too quickly (lest the brain swell) nor too slowly (lest he seize if the sodium fell further). His liver function was markedly impaired, likely a combination of chemo toxicity from a recently-discovered genetic defect he carries as well as insult from this concomitant illness. His white count – which had scarcely risen above critically low levels since diagnosis – was soaring. His parvo level, which had recently fallen to a nadir of 2,300 viral particles per cc of blood, had skyrocketed to 3.4 million viral particles per cc of blood. With so much substrate to work on, the “cure” was overwhelming his body and causing a serum sickness of sorts.
With Callen in a drug-induced slumber and Jim dozing at his bedside, I snuck into the patient galley and foraged for a snack – the hunger from my morning run, two missed meals and a six-hour adrenaline rush having finally reached a zenith. I settled on a turkey sandwich – the very same sandwich I had proffered in years gone by to families who likewise waited and watched and prayed and cried for their loved ones, and the same sandwich I’d so often choked down at 2 a.m. when patients were plentiful and sustenance scarce. And despite the spongy white bread sticking to the roof of my mouth and the turkey being too dry to swallow, I gave thanks.
Over a course of hours, the sedating effects of the drugs loosened their grip ever so slightly. Callen began opening his eyes long enough to ask questions, then closing them before an answer could be given – not necessarily a bad thing, since answers weren’t yet easy to come by. More tests were ordered. More blood was drawn. More assessments were made. Doctors and nurses changed shifts, work hours having been modified to allow for holiday festivities. New opinions were offered. His sodium inched up by one. At least it was moving in the right direction. His symptoms responded to medication, his periods of wakefulness lengthened. His plea to return home reached a fevered pitch - thankfully, his only fever of the day. Callen made it very clear: he did not want to wake up the next morning in the place where six years prior and six floors up he had drawn his first breath.
And so it was - with some hesitation, a slew of prescriptions and gallons of Gatorade - that we were sent out into the night. For eight more days his symptoms would ebb and flow. They receded for a beautiful few hours during which time he celebrated turning six, then returned with a vengeance. Headaches of varying magnitude would awaken him at all hours of the night and strike without warning during the day. His week was an exhausting regimen of drugs to combat symptoms and blood draws to evaluate response. When on day 7 he felt well enough to join his classmates for an hour at school, I was called emergently to retrieve him: the headache had returned swiftly, and on its heels, fever. It seemed as if it would never end. We rushed to clinic for more evaluations and conversations. More blood was taken, IV antibiotics given. With his symptomatology, relapse had to be considered - progressive disease in the brain and spine the highest risk for someone with Callen’s prognosis. I tasted fear as more labs were ordered and CT scans were discussed.
And then, as if nothing of great significance had ever occurred, he awakened on day 8 – at his normal hour, with his usual spunky disposition, and for the first time without drugs on board. His checkup that day revealed numbers moving in the right direction, and a demeanor to match. He wasted no time making up for lost time - spending half of Friday at school, playing with friends, finally celebrating his hard-won next birthday, and enjoying his first pre-Christmas activities. We presented to clinic exuberant after a much-needed weekend furlough only to be placed immediately under house arrest: a late effect of illness, a delayed effect of chemo, a sign of impending trouble – whatever the as-of-yet-elucidated cause, his ANC has fallen to its lowest level in months.
Today is now day 4 of home exile. In a few hours we will head downtown for the fifth time in less than two weeks. There are labs to be drawn and results to await. There are discussions to be had and plans for cautious resumption of chemo and IVIG to be made. A run to clear my head of what has been and prepare for what will be is most definitely in order. A look out the window confirms the end of night is nigh: there is just enough time. And so I venture out – accustomed to the awaiting darkness, but perhaps a bit more receptive than usual to some light.
