Chapter Twenty
Casey
CONDITIONING STARTS on a Monday. Sienna doesn’t understand what the new medicine does, only that it makes her feel worse than anything before it.
I explain it to her the same way I explain everything, simply, with the truth scaled to what a four-year-old can carry.
“This medicine is going to make your body very tired. It’s going to clear out the old cells so the new ones have room to grow. ”
“Like cleaning my room before I get new toys?”
“Exactly like that.”
She accepts this. She trusts me. I’m her mother, and I’ve been explaining hard things in language she can understand for eighteen months.
If I tell her it’s necessary, it’s necessary.
The trust is the thing that guts me, because I’m authorizing chemotherapy for my four-year-old, and the trust means she won’t fight it.
That she won’t fight it makes me want to fight it for her.
The nausea starts on day two. Sienna vomits four times before noon.
The anti-emetics help, but they don’t eliminate it.
She lies in the hospital bed with Bart tucked beside her, looking smaller than she’s ever looked, which is saying something because Sienna has always been in the twentieth percentile for growth, and the last eighteen months have cost her growth she couldn’t spare year.
I sit beside her and hold a basin when she needs it.
I wipe her face with a cool cloth afterward.
I chart her intake, her output, her temperature, and her color.
I’m a nurse. Charting is how I cope. When the numbers are in front of me, the situation has boundaries.
When the numbers go in the chart, I can pretend I’m managing this as I’d manage any patient.
She isn’t any patient. She’s my daughter, and the conditioning regimen is doing exactly what it’s supposed to do, which is destroying her existing bone marrow so Sterling’s cells have somewhere to take root.
The medical logic is sound, but it also requires watching a four-year-old vomit into a basin while her stuffed elephant falls off the bed.
I pick up Bart and put him back beside her. She reaches for him without opening her eyes, the automatic gesture of a child who has learned to orient herself by the presence of one battered elephant.
Day three is worse. Day four is worse than that.
Sienna stops eating. She drinks apple juice through a straw because I bribe her with the promise that Bart gets juice too.
I pour apple juice into a tiny paper cup and hold it near Bart’s trunk.
Sienna watches Bart drink his juice. She manages three sips of her own.
The hair starts coming out during the second week.
Sienna finds it on her pillow one morning, a clump, auburn, a couple of shades darker than mine.
She picks it up and looks at it with the expression of a child who doesn’t understand why her body is doing something she didn’t ask it to do. “Mommy?” She’s crying.
“I know, baby.”
“I want it off.”
We go to the bathroom. I brought clippers from the estate because I knew this was coming.
Osgood told me it would happen after conditioning started, and I’ve been carrying the clippers in my bag since the first dose.
I’ve tried to prepare her for this, and she decided she wanted to shave it all off when it started falling out.
I’ve kept the clippers ready because if my daughter asks me to shave her head, I’m going to be the one who does it, not a nurse or an aide.
I set Sienna on the counter. She holds Bart. She looks at herself in the mirror, at the patches where the hair has already thinned, and at the clump on the left side that’s barely hanging on.
“It’ll grow back.” I try to sound cheerful, though my heart is breaking.
Her lower lip trembles. “When?”
“After the new cells start working.”
“Will it be the same color?”
“Probably. Maybe a little different.”
She nods. She’s four years old, sitting on a bathroom counter with a stuffed elephant, about to lose her hair because the medicine I authorized is doing what it’s supposed to do.
She’s brave in a way I’ll never be able to explain to anyone who hasn’t watched a child choose to be brave.
“Maybe it will come back like a rainbow.”
I have to pause and blink back tears so I can sound normal. “Probably not, but we can get some of that hair chalk and give you rainbow hair when it grows back.”
She smiles at that, though it dims when I turn on the clippers.
The buzz fills the small bathroom. “Ready?” She nods, and I start at the back, where it’s thinnest, and she won’t see it fall.
The hair drops to the counter, the floor, and into the sink.
Sienna watches in the mirror. She doesn’t cry until the front, when she can see the shape of her head changing, when the girl in the mirror stops looking like her.
Then she cries. She doesn’t cry loudly. It’s a thin, exhausted sound that comes from somewhere deeper than a four-year-old should have to reach.
I’m crying too, but I keep going. I finish and brush the loose hair off her shoulders and off Bart.
I look at my daughter through blurry eyes from my own tears.
She’s bald and tear-streaked but gray-eyed and fierce in a way that has comes from being brave because there’s no other option.
Sterling is in the doorway. I don’t know how long he’s been there. He’s watching all of it, blinking hard.
Without saying anything, he turns and walks down the hall to the family bathroom.
Through the wall, I hear a sound I can’t identify for a second.
Then I can. He’s crying in a hospital bathroom while his daughter sits bald on a counter, and he left the room so Sienna wouldn’t see it.
Leaving so Sienna wouldn’t see him break is the first genuinely fatherly thing he’s done besides offer his marrow without any kind of conditions.
I think about going to comfort him, but Sienna needs me, and I’m not sure I have it in me to offer him anything.
THE HARVEST HAPPENS the morning before transplant.
Sterling goes under general anesthesia at 7 a.m. I sit in the surgical waiting room with a coffee I don’t drink while Marnie sits with Sienna in the pediatric unit.
For ninety minutes, Sterling is unconscious on an operating table while a team draws marrow from his posterior iliac crest, and I sit in a plastic chair and think about the fact that the man I told that didn’t happen is currently letting a surgeon put needles into his pelvic bone for our daughter.
I called it a mistake. I told him it didn’t happen.
He’s on an operating table right now because he said yes without conditions, and I can’t reconcile the man who built a custody petition to take my daughter full-time with the man who’s under anesthesia for Sienna.
I’m not sure I need to reconcile them. Maybe they aren’t different men, just different versions of the same men.
But which is real? Which one is he now, almost five years after kicking me out on the strength of his sister’s accusation?
He comes out sore. I can tell my how he shifts around, but he never mentions it.
Not once, not in passing, or even when he lowers himself carefully into the chair beside Sienna’s bed.
He’s silent about it when he stands up slowly from the cafeteria table.
I know he’s in pain because I’m a nurse.
I watch him get out of chairs, favor his right side, and notice the micro-hesitation before he sits down, along with the controlled breath when he shifts position.
I see him wince getting into the car four days later, moving through the soreness as though it doesn’t exist, because acknowledging it would make the donation about him and he seems intent on not doing that.
He’s sore for a week, and I’m the only person who notices, but I don’t say anything because he clearly doesn’t want me to.
I wonder what kind of father he would have been over the past four years if his mother’s plan and his terrible choice hadn’t pushed us apart. I think he would have been a good one, and I hope I’m right, because he’ll be part of Sienna’s life for the rest of his. She deserves a good father.
If she lives.
I can’t stop adding that qualifier in my thoughts. He’s a good match but not identical. It could still go wrong. She could reject the cells. She could die, and there’s nothing I could do to save her.
The infusion is that afternoon, running through Sienna’s central line. It’s just a bag of Sterling’s cells, running through a tube into my daughter. It takes about an hour. It looks like a transfusion of saline. It looks like nothing.
I’ve been waiting eighteen months for something that looks like nothing.
I sit beside the bed, tense and shaking.
Sienna is sleeping. Bart is on the pillow.
The bag is hanging on the IV pole, the cells dripping through the line at a rate I could calculate in my sleep.
I watch them go in. Each drop carries the possibility that this works, her counts come up, the marrow engrafts, that my daughter’s body accepts Sterling’s cells and starts making its own blood again.
Each drop also carries the possibility that it doesn’t.
The wait begins. Engraftment takes two to four weeks.
The counts have to come up. The neutrophils have to appear.
Everything can still go wrong, including graft failure, infection, and graft-versus-host disease.
I know the statistics because I’m a nurse who has read every study Osgood has referenced and dug up many she hasn’t.
I know the odds are favorable. Favorable isn’t certain.
Favorable is a word doctors use to describe outcomes that work most of the time, and most of the time isn’t a number I can stake my daughter’s life on, especially since he’s a good match but not identical.
I sleep in the chair beside the bed every night. The chair reclines partway, enough that my neck is sore by morning but not enough that I can actually rest. I’ve slept in worse chairs than this. The one in Asheville, during Sienna’s first admission, didn’t recline at all. This one has armrests.
Sterling is there every day. He arrives at eight and sits in the chair outside the isolation room when visitors aren’t permitted.
He brings his laptop and pretends to work, but I can see the screen from the hallway, and it’s been on the same email for forty minutes today.
He reads to Sienna through the glass on the days the unit’s neutropenic precautions limit visitors, a chapter book about a girl who discovers she can talk to animals, read aloud, badly, doing voices that make Sienna laugh even when laughing hurts.
He does the voices wrong on purpose. I figured this out on day three, when he gave the cat a Southern accent and the dog a British one and Sienna corrected him with the exasperated authority of a four-year-old who takes animal voice accuracy very seriously.
He accepted the correction. He adjusted the next character.
He kept reading before giving the antelope an atrocious Scottish accent.
He doesn’t perform. He doesn’t make speeches about being there for his daughter or ask whether I’ve noticed how committed he is.
He sits in the chair, reads the book, adjusts the voices when Sienna tells him to, and goes home when she falls asleep.
Some nights, he doesn’t go home. Some nights, I walk past the family lounge at midnight and he’s on the couch with his shoes off, staring at the ceiling. He’s not sleeping much more than I am.
Sienna starts asking for him.
The first time, I think I mishear. She’s been asking for me exclusively since birth. Mommy for the meds, Mommy for the bath, Mommy for the story, and Mommy when it hurts. On day nine, she asks, “Can Sterling come read?”
She uses his name. Not Daddy, just Sterling. As though naming a friend she’s still evaluating.
“I’ll ask him,” I say.
He’s in the hallway, laptop open on his knees, pretending to work.
“She’s asking for you,” I say.
He looks up. “What?”
“Sienna. She wants you to come read.”
An expression moves across his face that I look away from because it isn’t mine to see. It’s open, vulnerable, and threatens to strip some of the defense I have to maintain to get through this without allowing myself to feel things I no longer want to acknowledge.
He clears his throat, closes the laptop, picks up the book, and goes in.
I stand in the corridor outside my daughter’s isolation room and listen to him read chapter seven in the wrong voices while Sienna corrects him, not sure what to do with what I’m feeling.
I don’t know how to handle my daughter asking for the man who threw me out, or that she likes his wrong voices, and she trusts him enough to correct him.
I don’t know how to be the mother who carried everything alone for four years and then watch my daughter reach for someone else.
Day fourteen, Nadine comes to the isolation room with the morning labs. She’s not smiling. Osgood doesn’t smile, but her posture has changed. She’s standing straighter. She’s holding the chart differently. “Neutrophils are climbing. Fifty-two this morning. Yesterday was thirty-one.”
I know what this means. I know what the word is before she says it.
“We’re seeing early engraftment.”
I sit down on the floor of the hospital corridor.
I don’t decide to do it. My legs stop working, and I sit where I’m, my back against the wall, my scrub-style shirt wrinkled, my hair unwashed for three days because I’ve been sleeping in the chair beside Sienna’s bed and washing my hair hasn’t been on the list.
I’ve been enduring all of this for eighteen months.
The diagnosis, the treatment, the relapse, the letter, the reunion, the estate, the conditioning, and the infusion.
I’ve spent eighteen months of carrying a sick child through a medical system while managing every detail alone, not crying in front of another person because crying would mean admitting I had doubts she would recover.
It might mean I needed help, and I’ve never been able to ask for help.
Sterling sits down on the floor next to me.
He doesn’t touch me or tell me it’s going to be okay.
He just sits on the linoleum in a hospital corridor, back against the wall, legs stretched out, polo shirt wrinkled, since he gave up wearing suits here days ago, and he waits. “Do you want me to get you a coffee?”
I laugh. It comes out a wet, ugly sound I haven’t made in front of another person in years. It sounds terrible, but it’s full of relief. “Yes,” I say.
He gets up and walks to the cafeteria. That’s all he does. For the moment, it’s more than enough.