A Turn for the Worse

My son Eli awakes with a fever. When you’re a cancer patient, a fever probably means infection, so off to the ER we go. Forget his finals review session that was planned for today.

At the hospital Eli is immediately whisked into an exam room and started on an IV antibiotic. Eventually he is admitted and we move to a room while we wait for the antibiotic to work its magic. While Eli gets a unit of blood, I head to the Ronald McDonald House downstairs for a bite.

Walking back down the hall toward Eli’s room, I spy a cluster of doctors and nurses assembled around his bed and quicken my pace. Eli’s blood pressure has dropped. The docs want to give him fluids to boost it, but the bag of blood is still going in, and they can’t give both blood and fluids through his implanted port at once, so they hold off.

His blood pressure does not bounce back, so they decide to start an IV. They try his arm, but the vein collapses. They try the other arm. Still no good. A painful prick into his right hand and another in his left also fail. They give up on the IV and stop the blood so he can get fluids through his port. The infusion pump won’t work fast enough, so the nurses take turns pushing the saline in by hand. His BP doesn’t budge.

A nurse tries another bolus of fluids, pumping so hard that she has to catch her breath. At 2 a.m. the doctor on the floor calls in a team from the ICU. Eli’s fingers pick constantly at the blankets as the docs tower over him, discussing his condition. They decide he needs to move to intensive care. I search frantically for my shoes, trying not to let my son see my panic. “They just need to watch you more closely,” I tell him. I call my husband, who can’t come because he’s home alone with our 9-year-old daughter.

Eli is rolled downstairs and plugged into even more machines. Nothing seems right with his body. His fever is too high and his heart rate too low. A kidney marker is the highest we’ve ever seen. He starts on a new blood pressure med, but the red numbers show a stubborn 94/50.

Eli is hungry but is not allowed to eat until he stabilizes. He needs both platelets and hemoglobin, but his port is busy with medication. More painful needle sticks. Finally one takes in his foot, and the blood begins to flow in.

His diastolic dips to 43. The medicine isn’t working. Eli is now in septic shock.

A doctor comes by and motions me into the hall. She wastes no time with pleasantries. “Today will be the turning point,” she says. “He will either get substantially better or substantially worse. If things go south, we’ll intubate him, sedate him, flood him with antibiotics and assume control of all his bodily functions. This can happen fast, so I want you to be prepared.”

I usually pepper the doctors with questions, but I am so petrified that I cannot summon a single word.

I walk back into Eli’s room and brush the back of my fingers over his pale cheek. Amid the beeping machines, the blinking monitors and the tattoo of my own turbulent heart, I perch at his bedside. As daylight leaks through the window, I watch and wait.

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Game Night

At home, evenings playing cards at the game shop are a Friday night ritual. My son Eli is one of the regulars, known, comfortable in the stuffy room alive with competition, laughter and the funk of young male bodies. Often he wins, and returns home beaming, his wallet a bit thicker than when he left.

But we aren’t home anymore, but in Chicago for two months of daily radiation treatments. It’s the latest upheaval in Eli’s three-month-old tangle with cancer. Staying at the Ronald McDonald House means being removed from every semblance of his normal life: home, school, friends, family, and his beloved card game.

Life at the Ronald McDonald House has the regimentation of prison life: Wake up, shower, swallow cereal in the communal dining room, study for three hours, down a quick lunch, drive to the Proton Center. Avoid eye contact with the other patients awaiting their punishment. Lie completely still for an impossible 30 minutes as the technicians zap his midsection with painful rays. Not a sneeze. Not a twitch. Stock. Still.

Back to the Ronald McDonald House. Collapse into a nap. Wake up groggy. Try to find a quiet corner of the busy dining room at dinner to avoid the constant prattle about medical procedures, side effects and setbacks.

Desperate for a break from the joyless routine, for a chance to feel like his 15-year-old self, Eli scopes out game nights in the area, finds one 40 minutes away. “But you won’t know anyone.” I caution. “And you’ll have to wear your surgical mask.”

“I know,” he says. “Let’s go.” He loads his backpack with boxes of cards and we set off. Eli is quiet in the car. Three highways and a tollbooth later, we pull into a parking lot with a cluster of cars near the door of a glass-fronted game shop, the only lights in the otherwise empty shopping center.

Eli pulls his knit Cubs hat over his bald head and dons his yellow mask. “Call me,” I say as he gets out of the car. “Yeah,” he mutters, and hoists his backpack onto his bony shoulder.

My stomach tightens as I watch him stride determinedly across the dark parking lot, alone. He walks in, stops to speak with the plaid-shirted guy behind the counter. Is it my imagination, or are people looking up at the gangly teen in the stocking cap? Eli scans the room full of strangers, eyes an available player in the corner and approaches him. The young man peers through his long hair at my pale, skinny son, nods. Eli sits down, pulls out his cards and begins to play.

A Side of Red Tears

As my son sleeps

I slip out to the waiting room, settle

into a vinyl chair and try to ignore

the home-improvement show playing

to no one.

In my lap is the flecked, photocopied packet

that is the plan of Eli’s treatment.

I feel I must educate myself about the five drugs,

with their unpronounceable names,

that will soon be careening

through my son’s veins.

 

The side effects are divided

into three categories:

Likely, Less Likely, and Rare

but Serious.

Along with the usual suspects

of nausea, vomiting and hair loss

in the Likely category are

red urine, sweat, tears and saliva.

I try to picture my son with

red tears

coursing down his cheeks.

It sounds like a horror

movie. I guess I’m glad they warned me.

I’m also grateful that

dark discoloration of the hands and feet and loss of nails

is on the Less Likely list,

along with seizures

and gonadal dysfunction.

 

On to Rare but Serious,

where the real fun begins.

Here I find a preponderance of the term

life-threatening,

which includes such outcomes

as lung damage, cardiac toxicity,

kidney failure and coma.

But they saved the best

for last:

“A new cancer or leukemia

resulting from this treatment.”

So all the misery to come,

even if successful,

could ultimately beget

more

cancer.

 

I put the paper down

with an unsteady hand,

and stare at the cheery

face on the screen

extolling the virtues of hickory cabinets.

I realize that I have made it through

only the first of the five

pages of side effects.

But this, I decide, will do

for now.

The Wrong Place

“I don’t think we’re in the right place,”

my son said,

looking up at the sign above the desk.

“What’s oncology?” he asked.

It was my turn to look up at Eli,

(my tall manboy with the baby face),

into those wondering hazel eyes.

My tongue curled around the word,

reluctant to release its awful power.

Big breath.

“It means cancer,” I said.

My husband came in from the parking lot

and we three trooped down a hall,

into a small room,

without enough space to breathe,

sat in hard plastic chairs,

and heard from an unsmiling doctor,

aggressive, unusual,

large tumor, sarcoma,

blood in the belly,

more detailed pathology,

bone marrow biopsy,

bone scan, body scan,

port-o-cath, clinical trials,

chemotherapy, radiation,

nausea, vomiting, losing hair,

treatment before Christmas,

no more school this year.

“No school!” Eli exclaimed,

as if that were the worst of the news.

But perhaps it was the only bit he could grasp

in the soup of this surreal conversation.

We sat and stared,

dry-eyed and numb,

nodded, signed, took appointment cards into helpless hands,

and slowly rose.

Our legs somehow carried us

from the small room,

back down the hall

and out of that right and wrong place

into the gray afternoon.

Spring poem

As I mix Sadie’s bottle
to bring an end to this June day,
that wanted to rain but didn’t,
the day to which she cannot bear to bid farewell,
she and Daddy head out the back door—slap!
to see if the swing will soothe her.
Then down skips Eli, preparing for bed,
who must kiss his sister good night.
This boy who ruled our world for seven years
with no desire to share his throne,
who dreaded the arrival of a small competitor.
“Leggo my Lego!” would be his constant refrain,
and, “Why couldn’t it be a brother, at least?”
But as soon as she came off the plane,
he hugged her and would not let go,
despite her cries.
And I saw that,
just as a first child makes you love your spouse more
for the father he has become,
so this experience is made richer by sharing it
with a new big brother,
who now seeks to delay bed
by hopping on a swing,
and with his body (suddenly so long and lean)
showing his timid companion how it’s done.
Laughing, he looks back at her
in her cocoon
to see if she laughs, too.
Watching,
though pajamas await and darkness falls,
I cannot bring myself
to call them in.