Sara
THERE IS AN UNEXPECTED COMFORT to being at the oncology wing of the hospital, a sense that I am a member of the club.
From the kindhearted parking attendant who asks us if it’s our first time, to the legions of children with pink emesis basins tucked beneath their arms like teddy bears—these people have all been here before us, and there’s safety in numbers.
We take the elevator to the third floor, to the office of Dr. Harrison Chance. His name alone has put me off. Why not Dr. Victor? “He’s late,” I say to Brian, as I check my watch for the twentieth time. A spider plant languishes, brown, on a windowsill. I hope he is better with people.
To amuse Kate, who is starting to lose it, I inflate a rubber glove and knot it into a coxcomb balloon.
On the glove dispenser near the sink is a prominent sign, warning parents not to do this very thing.
We bat it back and forth, playing volleyball, until Dr. Chance himself comes in without a single apology for his delay.
“Mr. and Mrs. Fitzgerald.” He is tall and rail-thin, with snapping blue eyes magnified by thick glasses, and a tightly set mouth. He catches Kate’s makeshift balloon in one hand and frowns at it. “Well, I can see there’s already a problem.”
Brian and I exchange a glance. Is this coldhearted man the one who will lead us through this war, our general, our white knight?
Before we can even backpedal with explanations, Dr. Chance takes a Sharpie marker and draws a face on the latex, complete with a set of wire-rimmed glasses to match his own.
“There,” he says, and with a smile that changes him, he hands it back to Kate.
· · ·
I only see my sister Suzanne once or twice a year. She lives less than an hour and several thousand philosophical convictions away.
As far as I can tell, Suzanne gets paid a lot of money to boss people around.
Which means, theoretically, that she did her career training with me.
Our father died while mowing the lawn on his forty-ninth birthday; our mother never quite sewed herself together in the aftermath.
Suzanne, ten years my senior, took up the slack.
She made sure I did my homework and filled out law school applications and dreamed big.
She was smart and beautiful and always knew what to say at any given moment.
She could take any catastrophe and find the logical antidote to cure it, which is what made her such a success at her job.
She was just as comfortable in a boardroom as she was jogging along the Charles.
She made it all look easy. Who wouldn’t want a role model like that?
My first strike was marrying a guy without a college degree. My second and third were getting pregnant. I suppose that when I didn’t go on to become the next Gloria Allred, she was justified in counting me a failure. And I suppose that until now, I was justified in thinking that I wasn’t one.
Don’t get me wrong, she loves her niece and nephew. She sends them carvings from Africa, shells from Bali, chocolates from Switzerland. Jesse wants a glass office like hers when he grows up. “We can’t all be Aunt Zanne,” I tell him, when what I mean is that I can’t be her.
I don’t remember which of us stopped returning phone calls first, but it was easier that way. There’s nothing worse than silence, strung like heavy beads on too delicate a conversation. So it takes me a full week before I pick up the phone. I dial direct. “Suzanne Crofton’s line,” a man says.
“Yes.” I hesitate. “Is she available?”
“She’s in a meeting.”
“Please . . .” I take a deep breath. “Please tell her it’s her sister calling.”
A moment later that smooth, cool voice falls into my ear. “Sara. It’s been a while.”
She is the person I ran to when I got my period; the one who helped me knit back together my first broken heart; the hand I would reach for in the middle of the night when I could no longer remember which side our father parted his hair on, or what it sounded like when our mother laughed.
No matter what she is now, before all that, she was my built-in best friend. “Zanne?” I say. “How are you?”
· · ·
Thirty-six hours after Kate is officially diagnosed with APL, Brian and I are given an opportunity to ask questions.
Kate messes with glitter glue with a child-life specialist while we meet with a team of doctors, nurses, and psychiatrists.
The nurses, I have already learned, are the ones who give us the answers we’re desperate for.
Unlike the doctors, who fidget like they need to be somewhere else, the nurses patiently answer us as if we are the first set of parents to ever have this kind of meeting with them, instead of the thousandth.
“The thing about leukemia,” one nurse explains, “is that we haven’t even inserted a needle for the first treatment when we’re already thinking three treatments down the line.
This particular illness carries a pretty poor prognosis, so we need to be thinking ahead to what happens next.
What makes APL a little trickier is that it’s a chemoresistant disease. ”
“What’s that?” Brian asks.
“Normally, with myelogenous leukemias, as long as the organs hold up, you can potentially reinduce the patient into remission every time there’s a relapse.
You’re exhausting their body, but you know it will respond to treatment over and over.
However, with APL, once you’ve offered a given therapy, you usually can’t rely upon it again.
And to date, there’s only so much we can do. ”
“Are you saying,” Brian swallows. “Are you saying she’s going to die?”
“I’m saying there are no guarantees.”
“So what do you do?”
A different nurse answers. “Kate will start a week of chemotherapy, in the hopes that we can kill off the diseased cells and put her into remission. She’ll most likely have nausea and vomiting, which we’ll try to keep to a minimum with antiemetics. She’ll lose her hair.”
At this, a tiny cry escapes from me. This is such a small thing, and yet it’s the banner that will let others know what’s wrong with Kate. Only six months ago, she had her first haircut; the gold ringlets curled like coins on the floor of the SuperCuts.
“She may develop diarrhea. There’s a very good chance that, with her own immune system laid low, she will get an infection that will require hospitalization.
Chemo may cause developmental delays, as well.
She’ll have a course of consolidation chemotherapy about two weeks after that, and then a few courses of maintenance therapy.
The exact number will depend on the results we get from periodic bone marrow aspirations. ”
“Then what?” Brian asks.
“Then we watch her,” Dr. Chance replies.
“With APL, you’ll want to be vigilant for signs of relapse.
She’ll have to come into the ER if she has any hemorrhaging, fever, cough, or infection.
And as far as further treatment, she’ll have some options.
The idea is to get Kate’s body producing healthy bone marrow.
In the unlikely event that we achieve molecular remission with chemo, we can retrieve Kate’s own cells and reinstill them—an autologous harvest. If she relapses, we may try to transplant someone else’s marrow into Kate to produce blood cells. Does Kate have any siblings?”
“A brother,” I say. A thought dawns, a horrible one. “Could he have this, too?”
“It’s very unlikely. But he may wind up being a match for an allogeneic transplant.
If not, we’ll put Kate on the national registry for MUD—a matched, unrelated donor.
However, getting a transplant from a stranger who’s a match is much more dangerous than getting one from a relative—the risk of mortality greatly increases. ”
The information is endless, a series of darts thrown so fast I cannot feel them sting anymore. We are told: Do not think; just give your child up to us, because otherwise she’s going to die. For every answer they give us, we have another question.
Will her hair grow back?
Will she ever go to school?
Can she play with friends?
Did this happen because of where we live?
Did this happen because of who we are?
“What will it be like,” I hear myself ask, “if she dies?”
Dr. Chance looks at me. “It depends on what she succumbs to,” he explains.
“If it’s infection, she’ll be in respiratory distress and on a ventilator.
If it’s hemorrhage, she’ll bleed out after losing consciousness.
If it’s organ failure, the characteristics will vary depending on the system in distress.
Often there’s a combination of all of these. ”
“Will she know what’s happening,” I ask, when what I really mean is, How will I survive this?
“Mrs. Fitzgerald,” he says, as if he has heard my unspoken question, “of the twenty children here today, ten will be dead in a few years. I don’t know which group Kate will be in.”
· · ·
To save Kate’s life, part of her has to die.
That’s the purpose of chemotherapy—to wipe out all the leukemic cells.
To this end, a central line has been placed beneath Kate’s collarbone, a three-pronged port that will be the entry point for multiple medication administrations, IV fluids, and blood draws.
I look at the tubes sprouting from her thin chest and think of science fiction movies.
She has already had a baseline EKG, to make sure her heart can withstand chemo. She’s had dexamethasone ophthalmic drops, because one of the drugs causes conjunctivitis. She’s had blood drawn from her central line, to test for renal and liver function.
The nurse hangs the infusion bags on the IV pole and smoothes Kate’s hair. “Will she feel it?” I ask.