The kids all have questions. (2018)

It was Thursday December 28 when the EMTs left me outside a room in the Hematology-Oncology unit.

Starting at dawn that morning, just after the EMTs walked away, it seemed like the entire unit was entirely focused on me. I kept falling asleep and waking up to a team of doctors standing around my bed—four or five pairs of eyes above a wall of white coats, hands folded at the stomach or behind the back. They each introduced themselves, every time, but I never heard even one name, let alone remembered it. They asked the same questions and performed the same examinations, over and over again. They held informal meetings outside my door and attended larger meetings behind another door where they discussed my case with doctors from different specialties. My nurse came back almost every hour to hang another bag on my IV pole or adjust the pills I was taking.

Rapid, out of control cell growth is what distinguishes cancer. In leukemia this starts in the bone marrow, where stem cells form blood cells—red cells, white cells and platelets. Stem cells mutate and multiply into billions of cells called leukemic blasts. The healthy cells struggle to do their job as more blasts fill the blood. By Thursday, these immature, nonfunctioning cells constituted eighty percent of my circulating blood.

Concerned about how aggressively the leukemia was advancing and how quickly my blood count was changing, the medical team drew blood and ran labs three times a day. My platelet level was dropping. If I started bleeding, I wouldn’t clot. The low level of red blood cells left me increasingly short of breath. In the morning, I felt out of breath going to the bathroom. By evening, I felt out of breath lifting a spoon of yogurt to my mouth. And as the number of white blood cells continued to drop, my immune system functioned less and less effectively. Anyone who entered my room wore a mask and gloves. Infection was the most immediate risk, including a complication called sepsis, which is a rapid chain reaction of bacterial infection that can cause tissue damage, organ failure, and death.

I had persistent fevers of 102 to 103 degrees. They put me on a course of three different broad-based antibiotics, as well as an antifungal and an antiviral. Maybe this stabilized me, but I didn’t improve. I developed a hormone condition that impacted my kidneys. The sodium level in my blood was also too low. Both of these caused me to retain water. The retained water made my breathing worse, and they started giving me oxygen. First in my nose, through a cannula, and then through a mask. After that, my heart began beating irregularly. They added a medication and wired me into a telemetry device so they could track my heart rate and my blood oxygen level from the nurses’ station.

And now it is Friday and I am staring at the back of my closed door, listening to my family putting on their masks and gloves in the hallway. Suzanne says something about the right way to put on a mask. They were all here yesterday.

“I know how to do this, Mom,” Rosalind answers. She is seventeen.

“She knows you know how to do it.” her older sister speaks quietly and calmly. “She’s just stressed.”

“I know she’s stressed, Isabelle. We’re all stressed.”

I don’t hear Caleb’s voice and wonder if he’s with them.

Seeing them has been my single focus all day. But now they are here, now they are coming into my room, I don’t stand up or even sit up. They each hug me lying on the bed. Suzanne kisses me by pressing her mask against my lips. My fever is rising and I have started shivering again. I don’t know where I will find the energy for them.

Rosalind slouches in a chair by the window, legs planted apart, staring at her red Converse sneakers, which she still hasn’t tied. And probably won’t. She is almost six feet tall.

Isabelle sits at the table, bent over a closed book, waiting for someone to start talking. She is home for a month before college starts at the end of January.

Caleb started crying when he lay on top of me, and there are still tears in his eyes as he stands up and unzips his jacket. About to turn sixteen, he is now almost as tall as Rosalind. He pulls a deck of cards out of the pocket and then shrugs off the jacket onto the back of his chair.

“Caleb brought cards.” Suzanne is sitting on the edge of the bed, holding my hand. “In case you want to play.”

But I don’t want to get out of bed.

“We could play around the bed.”

I don’t want to play.

They tell me what is happening at home. I try to rally. One of Caleb’s best friends is visiting from Georgia with his sister, who is a friend of Rosalind’s. I try so hard to rally. They talk about a movie. And then a television show. But when they aren’t talking, I am silent. Then everyone falls silent.

“I think the kids all have questions,” Suzanne says finally.

I look at Isabelle, who looks down at the cover of her book.

“Do you guys have questions?” My voice quavers and shakes.

Rosalind shrugs.

“Not really,” Isabelle says, her hands on either side of the book as if about to open it. “Mom talked to us already.”

It was just two days ago when everyone thought I had something that the right antibiotic would cure. We are all overwhelmed. We are all waiting for the entire crisis to blow away, like the end of a snowstorm.

“One question—” Suzanne says doggedly. She is a therapist. “—was how long you would be here.”

“I don’t know.” That’s all I say.

It takes me a minute to realize they are waiting for me to keep talking. Rosalind has looked up from her sneakers. Isabelle has folded her hands on her book and rested her chin on her hands.

I rally. “Once they know what kind of leukemia I have, they will start giving me chemo. Once they give me chemo, my immune system will collapse and I won’t be able to leave this room. So I won’t be coming home for at least a month.”

“A month?” Rosalind cries.

"Will you have to stay in the room for a month?" Isabelle asks. 

“I don’t know.” I am so tired of not knowing. “I just don’t know. I’m sorry.” Everyone is silent again. “There’s a lot I don’t know right now.”

“It’s okay, Dad,” Rosalind says. “You’ll figure it out.”

“I should know more. I should understand this better. But it is so hard to pay attention when the doctors are talking to me.”

Caleb has been silent. “Dad?” he suddenly asks. “Are you going to die?” Then he starts sobbing. He sits there sobbing, his thin arm thrown across his eyes.

“Come here.” He doesn’t hear me at first because my voice is so weak. “Come over here, pal.”

Suzanne stands up so he can lie next to me. I hold him while he sobs and sobs. He raises his head, tears streaming down his face, to ask me again. And then a knock. And then the nurse opens the door.

“It's time for your CT scan.” A wheelchair waits in the hallway, and someone to push it.

“Could you come back?” Suzanne and I say at the same time.

“Five minutes,” I add. “Give us five minutes.”

The door closes. Caleb sits up, rubbing his eyes with the heels of his hands. “Are you going to die, Dad?”

I have as much energy and focus, right at this moment, as I have had in days. And I tell him the truth. “I don’t know.” He is still crying, but he is listening to me very closely. “I don’t know if I’m going to die. But I am not planning on it.”

Isabelle is crying on top of her book. Rosalind is crying between her sneakers. Suzanne is rubbing his back. “It’s a really good hospital,” she offers. She is also crying.

“Yes. I am in a really good hospital. They have cured many people like me before.”

A knock again, not even close to five minutes later, and many apologies from the nurse. “If you can’t go now, we’ll lose Transport and it could take two hours to get them back here.”

I throw my legs over the side of the bed.

The nurse looks at the faces around the room. “I’m sorry. I’m so sorry. It won’t take that long. About an hour.”

“Do you want us to stay?” Suzanne asks me. They haven’t been here very long. And I have been waiting for them all day.

The moment is gone. My energy is gone. “No.”

“We can wait an hour.” It was four. “We were planning to be here until six.”

“No. It’s okay.”

I stand up, unsteadily. The nurse has to hold my arm. “Do you need the wheelchair in the room? He can bring it right next to the bed.”

“No.” I am so ashamed at how weak I am. “I can walk.” But I barely can. I almost trip on the footrests and drop into the chair. Then I sit there, staring blankly ahead, as they fold first one blanket and then another around my shaking shoulders.

The chair is pulling back and turning down the hallway. “Dad!” Caleb leaps off the bed and runs across the room to hug me in the wheelchair. “Bye Dad.” His head rests briefly in the hollow between my neck and my shoulder. “I love you.”

When the chair finishes turning around and starts moving away down the hall, Caleb is standing in the doorway with Suzanne and his sisters, arms wrapped around each other.