Two months after divorcing my wife because I believed our shattered marriage was destroying us both, I found her alone in a Chicago hospital.
Chapter 16
Maren gained weight the way a glacier moves.
Six hundred five grams on day fourteen. Six hundred forty on day twenty-one. Six hundred ninety on day twenty-six. Dr. Tolan had told me at the beginning that a baby this small is measured in single grams, and that a day with no loss is a good day, and that I should stop asking him for a finish line. I kept asking anyway. He kept answering anyway. He never once made me feel small for it.
On day twenty-seven, they took her off the ventilator.
I was standing in the hallway when they did it, because they had asked me to, because they had learned that the father of bed twelve had a habit of standing at the porthole and asking questions in a voice the nurses could hear through their stethoscopes. So they did it while I stood outside with my hands flat against the wall and Aaron beside me, and for forty-five seconds I heard nothing at all through that door, and I have never been so afraid in my life.
Then I heard a sound.
Not a machine. Not an alarm. A small, wet, furious sound, like a cat objecting.
“She’s on CPAP and she is not happy about it,” Osei said, coming out. “Colonel. Your daughter has opinions.”
I laughed and had to sit down on the floor.
They let Sophie see her for the first time that afternoon.
They wheeled her up in a chair. She was three weeks past the seizure and three weeks past the delivery, bald under a gray scarf, forty pounds lighter than the woman I had married, with a PICC line taped to her upper arm and a mask over her face, and she could not walk and had not walked in six weeks, and they brought her to the sink by the door and a nurse washed her hands for her.
She looked at the porthole.
And then my ex-wife, who had fought thirteen weeks in a corridor and refused induction chemotherapy for a child she had been told she would lose, put one hand through that porthole and rested one finger on a seven-hundred-forty-gram back, and said nothing at all for eleven minutes.
Nobody talked. Osei stood at the end of the bed with her clipboard and did not write anything down. Margaret stood in the doorway with her gloves in her fist. Aaron was somewhere out in the hallway. And I stood behind Sophie’s chair and watched the back of her scarf shake.
“Maren,” Sophie said, finally, into the mask. “Hi.”
After induction brought Sophie’s leukemia into remission and her doctors judged her strong enough to proceed, the transplant conference happened in a room with six chairs.
Dr. Raman, Dr. Tolan, a social worker named Reyes, Aaron, Margaret, Michael and me. Sophie was on a video link from her room because she could not sit up for an hour.
Dr. Raman put up the slide and said the thing I had been waiting to hear for five weeks.
“We have a unit.”
I did not understand her for a moment.
“Cord blood,” she said. “A public bank unit. Single unit, five of six, cell dose on the low side but adequate at our target weight. European bank, frozen since 2011.” She looked up. “It’s real. We could transplant with it.”
“Then why,” Margaret said, “is your face doing that.”
“Because it’s a backup, and I want you to understand what a backup means.” Dr. Raman clicked. “Cord blood with a low cell dose engrafts slowly. Slowly means a longer window with no immune system. That means more infection risk, more time in this building, and a higher chance of failure to engraft. It is a real option and if we need it we will use it.”
“And the other option.”
“The other option is sitting in that chair.” She gestured, without embarrassment, at Michael. “Haploidentical transplant from a healthy thirty-eight-year-old sibling. Higher cell dose, faster engraftment, better long-term graft-versus-leukemia effect — the marrow itself will help fight what’s left of her disease. It is the better transplant. It is also, for her, the harder one. More immunosuppression beforehand. A serious risk of graft-versus-host disease, which in the acute form is a rash, and in the worst form is her new immune system attacking her gut and her liver. Two weeks of feeling like she’s been poisoned before she feels anything else.”
“So better odds of surviving the disease,” I said. “Worse odds of surviving the treatment.”
“Exactly that,” Dr. Raman said. “We have talked about this before in this room. It is still the choice.”
Michael spoke up. He had been sitting with his elbows on his knees the whole time.
“I already said yes.”
“You can say yes again after the workup,” Dr. Raman said. “The workup is not a formality. We have to clear you, and it’s a real screening — cardiac, pulmonary, infectious, and then the donation itself. Five days of injections before the collection, and then either five hours on an apheresis machine or a surgical harvest under general anesthesia. It is uncomfortable. It is not dangerous, but it is not nothing.”
“I fix diesel engines for a living,” Michael said. “I’ll be fine.”
There was a pause. Then Michael said the thing that ended the meeting.
“Can I ask something?”
“Anything.”
“What happens to her if I can’t do it.”
Dr. Raman did not soften it. She had never once softened anything and that was the reason I trusted her more than almost anyone I have ever met.
“Then we use the cord unit, and we accept a slower engraftment and a higher failure risk, and we tell you honestly that it is a thinner wire.”
Michael nodded slowly.
“Then let’s get the workup today,” he said. “And call the bank and tell them not to thaw anything yet.”
The follow-up came back on a Tuesday, and Dr. Raman called Michael and me into the office together.
Michael’s cardiac workup had thrown a flag. Not a serious one — an incidental finding, a mild congenital valve issue he had had his whole life and never known about, that meant an anesthesiologist would not lightly put him under general anesthesia for a surgical marrow harvest.
I watched his face.
“Then do the other one,” Michael said. “The machine. The five hours.”
“The peripheral route,” Dr. Raman said, “requires five days of filgrastim injections beforehand. That’s a drug that makes your bones hurt. It mobilizes stem cells into the bloodstream. Most people describe the last two days as the worst body aches of their life. And it still requires that we place a large-bore line in your chest the morning of, because the apheresis machine may process several times your blood volume over the course of the collection.”
“How much of me comes out.”
“None that doesn’t go back in.”
Michael looked at his hands, the same hands as always, mechanic’s hands, oil in the creases.
“When do we start the shots.”
