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 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 wi
ll 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.
"Nope. Hey, Kate, look here." She points to the bag of Daunorubicin, covered with a dark bag to protect it from light. Spotting it are brightly colored stickers she's helped Kate make while we were waiting. I saw one teenager with a Post-it note on his: Jesus saves. Chemo scores.
This is what starts coursing through her veins: the Daunorubicin, 50 mg in 25 ccs of D5W; Cytarabine, 46 mg in a D5W infusion, a continuous twenty-four-hour IV; Allopurinol, 92 mg IV. Or in other words, poison. I imagine a great battle going on inside her. I picture shining armies, casualties that evaporate through her pores.
They tell us Kate will most likely get sick within a few days, but it takes only two hours before she starts throwing up. Brian pushes the call button, and a nurse comes into the room. "We'll get her some Reglan," she says, and she disappears.
When Kate isn't vomiting, she's crying. I sit on the edge of the bed, holding her half on my lap. The nurses do not have time to nurse. Short-staffed, they administer antiemetics in the IV; they stay for a few moments to see how Kate responds—but inevitably they are called elsewhere to another emergency and the rest falls to us. Brian, who has to leave the room if one of our children gets a stomach virus, is a model of efficiency: wiping her forehead, holding her thin shoulders, dabbing tissues around her mouth. "You can get through this," he murmurs to her each time she spits up, but he may only be talking to himself.
And I, too, am surprising myself. With grim resolve I make a ballet out of rinsing the emesis basin and bringing it back. If you focus on sandbagging the beachhead, you can ignore the tsunami that's approaching.
Try it any other way, and you'll go crazy.
Brian brings Jesse to the hospital for his blood test: a simple finger stick. He needs to be restrained by Brian and two male residents; he screams down the hospital. I stand back, and cross my arms, and inadvertently think of Kate, who stopped crying over procedures two days ago.
Some doctor will look at this sample of blood, and will be able to analyze six proteins, floating invisibly. If these six proteins are the same as Kate's, then Jesse will be an HLA match—a potential donor for bone marrow for his sister. How bad can the odds be, I think, to match six times over?
As bad as getting leukemia in the first place.
The phlebotomist goes off with her blood sample, and Brian and the doctors release Jesse. He bolts off the table into my arms. "Mommy, they stuck me." He holds up his finger, festooned with a Rugrats Band-Aid. His damp, bright face is hot against my skin.
I hold him close. I say all the right things. But it is so, so hard to make myself feel sorry for him.
"Unfortunately," Dr. Chance says, "your son isn't a match."
My eyes focus on the houseplant, which still sits withered and brown on the sill. Someone ought to get rid of that thing. Someone ought to replace it with orchids, with birds-of-paradise, and other unlikely blooms.
"It's possible that an unrelated donor will crop up on the national marrow registry."
Brian leans forward, stiff and tense. "But you said a transplant from an unrelated donor was dangerous."
"Yes, I did," Dr. Chance says. "But sometimes it's all we've got."
I glance up. "What if you can't find a match in the registry?"
"Well." The oncologist rubs his forehead. "Then we try to keep her going until research catches up to her."
He is talking about my little girl as if she were some kind of machine: a car with a faulty carburetor, a plane whose landing gear is stuck. Rather than face this, I turn away just in time to see one of the misbegotten leaves on the plant make its suicide plunge to the carpet. Without an explanation I get to my feet and pick up the planter. I walk out of Dr. Chance's office, past the receptionist and the other shell-shocked parents waiting with their sick children. At the first trash receptacle I find, I dump the plant and all its desiccated soil. I stare at the terra-cotta pot in my hand, and I am just thinking about smashing it down on the tile floor when I hear a voice behind me.
"Sara," Dr. Chance says. "You all right?"
I turn around slowly, tears springing to my eyes. "I'm fine. I'm healthy. I'm going to live a long, long life."
Handing him the planter, I apologize. He nods, and offers me a handkerchief from his own pocket.
"I thought it might be Jesse who could save her. I wanted it to be Jesse."
"We all did," Dr. Chance answers. "Listen. Twenty years ago, the survival rate was even smaller. And I've known lots of families where one sibling isn't a match, but another sibling turns out to be just right."
We only have those two, I start to say, and then I realize that Dr. Chance is talking about a family I haven't yet had, of children I never intended. I turn to him, a question on my lips.
"Brian will wonder where we've gone." He starts to walk toward his office, holding up the pot. "What plants," he asks conversationally, "would I be least likely to kill?"
It is so easy to presume that while your own world has ground to an absolute halt, so has everyone else's. But the trash collector has taken our garbage and left the cans in the road, just like always. There is a bill from the oil truck tucked into the front door. Neatly stacked on the counter is a week's worth of mail. Amazingly, life has gone on.
Kate is released from the hospital a full week after her admission for induction chemotherapy. The central line still snaking from her chest bells out her blouse. The nurses give me a pep talk for encouragement, and a long list of instructions to follow: when to and when not to call the emergency room, when we are expected back for more chemotherapy, how to be careful during Kate's period of immunosuppression.
At six the next morning, the door to our bedroom opens. Kate tiptoes toward the bed, although Brian and I have come awake in an instant. "What is it, honey?" Brian asks.
She doesn't speak, just lifts her hand to her head and threads her fingers through her hair. It comes out in a thick clump, drifts down to the carpet like a small blizzard.
"All done," Kate announces a few nights later at dinner. Her plate is still full; she hasn't touched her beans or her meat loaf. She dances off to the living room to play.
"Me too." Jesse pushes back from the table. "Can I be excused?"
Brian spears another mouthful with his fork. "Not until you finish everything green."
"I hate beans."
"They're not too crazy about you, either."
Jesse looks at Kate's plate. "She gets to be finished. That's not fair."
Brian sets his fork down on the side of his plate. "Fair?" he answers, his voice too quiet. "You want to be fair? All right, Jess. The next time Kate has a bone marrow aspiration, we'll let you get one, too. When we flush her central line, we'll make sure you go through something equally as painful. And next time she gets chemo, we'll—"
"Brian!" I interrupt.
He stops as abruptly as he's started, and passes a shaking hand over his eyes. Then his gaze lands on Jesse, who has taken refuge under my arm. "I… I'm sorry, Jess. I don't…" But whatever he is about to say vanishes, as Brian walks out of the kitchen.
For a long moment
we sit in silence. Then Jesse turns to me. "Is Daddy sick, too?"
I think hard before I answer. "We're all going to be fine," I reply.
On the one-week anniversary of our return home, we are awakened in the middle of the night by a crash. Brian and I race each other to Kate's room. She lies in bed, shaking so hard that she's knocked a lamp off her nightstand. "She's burning up," I tell Brian, when I lay my hand against her forehead.
I have wondered how I will decide whether or not to call the doctor, should Kate develop any strange symptoms. I look at her now and cannot believe I would ever be so stupid to believe that I wouldn't know, immediately, what Sick looks like. "We're going to the ER," I announce, although Brian is already wrapping Kate's blankets around her and lifting her out of her crib. We bustle her to the car and start the engine and then remember that we cannot leave Jesse home alone.
"You go with her," Brian answers, reading my mind. "I'll stay here." But he doesn't take his eyes off Kate.
Minutes later, we are speeding toward the hospital, Jesse in the backseat next to his sister, asking why we need to get up, when the sun hasn't.
In the ER, Jesse sleeps on a nest of our coats. Brian and I watch the doctors hover over Kate's feverish body, bees over a field of flowers, drawing what they can from her. She is pan-cultured and given a spinal tap to try to isolate the cause of the infection and rule out meningitis. A radiologist brings in a portable X-ray machine to take a film of her chest, to see if this infection lives in her lungs.
Afterward, he places the chest film on the light panel outside the door. Kate's ribs seem as thin as matchsticks, and there is a large gray blot just off center. My knees go weak, and I find myself grabbing on to Brian's arm. "It's a tumor. The cancer's metastasized."
The doctor puts his hand on my shoulder. "Mrs. Fitzgerald," he says, "that's Kate's heart."
Pancytopenia is a fancy word that means there is nothing in Kate's body protecting her against infection. It means, Dr. Chance says, that the chemo worked—that a great majority of white blood cells in Kate's body have been wiped out. It also means that nadir sepsis—a post-chemo infection—is not a likelihood, but a given.
My Sister's Keeper Page 6
