1990
THERE IS AN UNEXPECTED COMFORT to being at the oncology wing of the hospital, a sense that I am amember of the club. From the kindhearted parking attendant who asks us if it’s our first time, to the legionsof children with pink emesis basins tucked beneath their arms like teddy bears—these people have all beenhere 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 plantlanguishes, brown, on a windowsill. I hope he is better with people.
To amuse Kate, who is starting to lose it, I inflate1 a rubber glove and knot it into a coxcomb2 balloon. On theglove dispenser near the sink is a prominent sign, warning parents not to do this very thing. We bat it backand forth3, 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 atightly set mouth. He catches Kate’s makeshift balloon in one hand and frowns at it. “Well, I can see there’salready a problem.”
Brian and I exchange a glance. Is this coldhearted man the one who will lead us through this war, ourgeneral, our white knight4? Before we can even backpedal with explanations, Dr. Chance takes a Sharpiemarker 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 thousandphilosophical convictions away.
As far as I can tell, Suzanne gets paid a lot of money to boss people around. Which means, theoretically, thatshe did her career training with me. Our father died while mowing5 the lawn on his forty-ninth birthday; ourmother 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 smartand beautiful and always knew what to say at any given moment. She could take any catastrophe6 and find thelogical antidote7 to cure it, which is what made her such a success at her job. She was just as comfortable in aboardroom as she was jogging along the Charles. She made it all look easy. Who wouldn’t want a role modellike that?
My first strike was marrying a guy without a college degree. My second and third were getting pregnant. Isuppose that when I didn’t go on to become the next Gloria Allred, she was justified8 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 carvings9 from Africa, shells from Bali,chocolates from Switzerland. Jesse wants a glass office like hers when he grows up. “We can’t all be AuntZanne,” 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 nothingworse than silence, strung like heavy beads10 on too delicate a conversation. So it takes me a full week before Ipick 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 brokenheart; the hand I would reach for in the middle of the night when I could no longer remember which side ourfather parted his hair on, or what it sounded like when our mother laughed. No matter what she is now, beforeall 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 askquestions. Kate messes with glitter glue with a child-life specialist while we meet with a team of doctors,nurses, and psychiatrists11. The nurses, I have already learned, are the ones who give us the answers we’redesperate for. Unlike the doctors, who fidget like they need to be somewhere else, the nurses patiently answerus 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 firsttreatment when we’re already thinking three treatments down the line. This particular illness carries a prettypoor prognosis, so we need to be thinking ahead to what happens next. What makes APL a little trickier12 isthat 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 thepatient into remission every time there’s a relapse. You’re exhausting their body, but you know it willrespond to treatment over and over. However, with APL, once you’ve offered a given therapy, you usuallycan’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 thediseased cells and put her into remission. She’ll most likely have nausea13 and vomiting14, which we’ll try tokeep 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 othersknow what’s wrong with Kate. Only six months ago, she had her first haircut; the gold ringlets curled likecoins 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 willget an infection that will require hospitalization. Chemo may cause developmental delays, as well. She’llhave a course of consolidation15 chemotherapy about two weeks after that, and then a few courses ofmaintenance therapy. The exact number will depend on the results we get from periodic bone marrowaspirations.”
“Then what?” Brian asks.
“Then we watch her,” Dr. Chance replies. “With APL, you’ll want to be vigilant18 for signs of relapse. She’llhave to come into the ER if she has any hemorrhaging, fever, cough, or infection. And as far as furthertreatment, she’ll have some options. The idea is to get Kate’s body producing healthy bone marrow16. In theunlikely event that we achieve molecular19 remission with chemo, we can retrieve20 Kate’s own cells andreinstill them—an autologous harvest. If she relapses, we may try to transplant someone else’s marrow intoKate to produce blood cells. Does Kate have any siblings21?”
“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 onthe national registry for MUD—a matched, unrelated donor23. However, getting a transplant from a strangerwho’s a match is much more dangerous than getting one from a relative—the risk of mortality greatlyincreases.”
The information is endless, a series of darts24 thrown so fast I cannot feel them sting anymore. We are told: Donot 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 succumbs25 to,” he explains. “If it’s infection, she’ll be inrespiratory distress26 and on a ventilator. If it’s hemorrhage, she’ll bleed out after losing consciousness. If it’sorgan failure, the characteristics will vary depending on the system in distress. Often there’s a combination ofall 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, tenwill be dead in a few years. I don’t know which group Kate will be in.”
spaceTo save Kate’s life, part of her has to die. That’s the purpose of chemotherapy—to wipe out all the leukemiccells. To this end, a central line has been placed beneath Kate’s collarbone, a three-pronged port that will bethe entry point for multiple medication administrations, IV fluids, and blood draws. I look at the tubessprouting 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 dexamethasoneophthalmic drops, because one of the drugs causes conjunctivitis. She’s had blood drawn27 from her centralline, to test for renal and liver function.
The nurse hangs the infusion28 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 itfrom light. Spotting it are brightly colored stickers she’s helped Kate make while we were waiting. I saw oneteenager with a Post-it note on his: Jesus saves. Chemo scores.
This is what starts coursing through her veins29: the Daunorubicin, 50 mg in 25 ccs of D5W; Cytarabine, 46mg in a D5W infusion, a continuous twenty-four-hour IV; Allopurinol, 92 mg IV. Or in other words, poison. Iimagine a great battle going on inside her. I picture shining armies, casualties that evaporate through herpores.
They tell us Kate will most likely get sick within a few days, but it takes only two hours before she startsthrowing up. Brian pushes the call button, and a nurse comes into the room. “We’ll get her some Reglan,” shesays, 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 nursesdo not have time to nurse. Short-staffed, they administer antiemetics in the IV; they stay for a few momentsto see how Kate responds—but inevitably30 they are called elsewhere to another emergency and the rest falls tous. 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, dabbing31 tissues around her mouth. “You can get throughthis,” he murmurs32 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 rinsing33 the emesis basin andbringing it back. If you focus on sandbagging the beachhead, you can ignore the tsunami34 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 Brianand two male residents; he screams down the hospital. I stand back, and cross my arms, and inadvertentlythink of Kate, who stopped crying over procedures two days ago.
Some doctor will look at this sample of blood, and will be able to analyze35 six proteins, floating invisibly. Ifthese six proteins are the same as Kate’s, then Jesse will be an HLA match—a potential donor for bonemarrow for his sister. How bad can the odds36 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 thetable 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 withered37 and brown on the sill. Someone ought to get rid ofthat thing. Someone ought to replace it with orchids38, 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 planewhose landing gear is stuck. Rather than face this, I turn away just in time to see one of the misbegottenleaves on the plant make its suicide plunge40 to the carpet. Without an explanation I get to my feet and pick upthe planter. I walk out of Dr. Chance’s office, past the receptionist and the other shell-shocked parentswaiting 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 whenI 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’veknown lots of families where one sibling22 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’tyet 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. “Whatplants,” he asks conversationally41, “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. Butthe trash collector has taken our garbage and left the cans in the road, just like always. There is a bill from theoil truck tucked into the front door. Neatly42 stacked on the counter is a week’s worth of mail. Amazingly, lifehas gone on.
Kate is released from the hospital a full week after her admission for induction43 chemotherapy. The centralline still snaking from her chest bells out her blouse. The nurses give me a pep talk for encouragement, and along list of instructions to follow: when to and when not to call the emergency room, when we are expectedback 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 Ihave 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 athick clump44, drifts down to the carpet like a small blizzard45.
“All done,” Kate announces a few nights later at dinner. Her plate is still full; she hasn’t touched her beans orher 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 befair? All right, Jess. The next time Kate has a bone marrow aspiration17, we’ll let you get one, too. When weflush her central line, we’ll make sure you go through something equally as painful. And next time she getschemo, we’ll—”
“Brian!” I interrupt.
He stops as abruptly46 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 awakened47 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 hernightstand. “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 strangesymptoms. 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 wrappingKate’s blankets around her and lifting her out of her crib. We bustle48 her to the car and start the engine andthen 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 weneed 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 hover49 over Kate’s feverish50 body,bees over a field of flowers, drawing what they can from her. She is pan-cultured and given a spinal51 tap to tryto isolate52 the cause of the infection and rule out meningitis. A radiologist brings in a portable X-ray machineto take a film of her chest, to see if this infection lives in her lungs.
Afterward53, he places the chest film on the light panel outside the door. Kate’s ribs54 seem as thin asmatchsticks, and there is a large gray blot55 just off center. My knees go weak, and I find myself grabbing on toBrian’s arm. “It’s a tumor56. 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. Itmeans, Dr. Chance says, that the chemo worked—that a great majority of white blood cells in Kate’s bodyhave been wiped out. It also means that nadir57 sepsis—a post-chemo infection—is not a likelihood, but agiven.
She is dosed with Tylenol to reduce her fever. She has blood, urine and respiratory secretion58 cultures taken,so that the appropriate antibiotics59 can be administered. It takes six hours before she is free of the rigors—around of violent shaking so fierce that she is in danger of shimmying off the bed.
The nurse—a woman who braided Kate’s hair in silky cornrows one afternoon a few weeks back, to makeher smile—takes Kate’s temperature and then turns to me. “Sara,” she says gently, “you can breathe now.”
Kate’s face looks as tiny and white as those distant moons that Brian likes to spot in his telescope—still,remote, cold. She looks like a corpse…and even worse, this is a relief, compared to watching her suffer.
“Hey.” Brian touches the crown of my head. He juggles60 Jesse in his other arm. It is nearly noon, and we areall still in pajamas61; we never thought to take a change of clothes. “I’m gonna take him down to the cafeteria;get some lunch. You want something?”
I shake my head. Scooting my chair closer to Kate’s bed, I smooth the covers over her legs. I take her hand,and measure it against my own.
Her eyes slit62 open. For a moment she struggles, unsure of where she is. “Kate,” I whisper. “I’m right here.”
As she turns her head and focuses on me, I lift her palm to my mouth, press a kiss in its center. “You are sobrave,” I tell her, and then I smile. “When I grow up, I want to be just like you.”
To my surprise, Kate shakes her head hard. Her voice is a feather, a thread. “No Mommy,” she says. “You’dbe sick.”
In my first dream, the IV fluid is dripping too quickly into Kate’s central line. The saline pumps her up fromthe inside out, a balloon to be inflated63. I try to pull the infusion, but it’s held fast in the central line. As Iwatch, Kate’s features smooth, blur64, obliterate65, until her face is a white oval that could be anyone at all.
In my second dream, I am in a maternity66 ward39, giving birth. My body tunnels in, my heart pulses low in mybelly. There is a rush of pressure, and then the baby arrives in a lightning rush and flow. “It’s a girl,” thenurse beams, and she hands me the newborn.
I pull the pink blanket from her face, then stop. “This isn’t Kate,” I say.
“Of course not,” the nurse agrees. “But she’s still yours.”
The angel that arrives is wearing Armani and barking into a cell phone as she enters the hospital room. “Sellit,” my sister orders. “I don’t care if you have to set up a lemonade stand in Fanueil Hall and give the sharesaway, Peter. I said sell.” She pushes a button and holds out her arms to me. “Hey,” Zanne soothes67 when Iburst into tears. “Did you really think I’d listen to you when you told me not to come?”
“But—”
“Faxes. Phones. I can work from your home. Who else is going to watch Jesse?”
Brian and I look at each other; we haven’t thought that far. In response, Brian stands up, hugs Zanneawkwardly. Jesse runs toward her at full tilt68. “Who’s that kid you adopted, Sara…because Jesse can’tpossibly be that big…” She disengages Jesse from her knees and leans down over the hospital bed, whereKate is sleeping. “I bet you don’t remember me,” Zanne says, her eyes bright. “But I remember you.”
It comes so easy—letting her take charge. Zanne gets Jesse involved in a game of tic-tac-toe and bullies69 aChinese restaurant that doesn’t deliver into bringing up lunch. I sit beside Kate, basking70 in my sister’scompetence. I let myself pretend she can fix the things I can’t.
After Zanne takes Jesse home for the night, Brian and I become bookends in the dark, bracketing Kate.
“Brian,” I whisper. “I’ve been thinking.”
He shifts in his seat. “What about?”
I lean forward, so that I catch his eye. “Having a baby.”
Brian’s eyes narrow. “Jesus, Sara.” He gets to his feet, turns his back to me. “Jesus.”
I stand up, too. “It’s not what you think.”
When he faces me, pain draws every line of his features tight. “We can’t just replace Kate if she dies,” hesays.
In the hospital bed, Kate shifts, rustling71 the sheets. I force myself to imagine her at age four, wearing aHalloween costume; age twelve, trying out lip gloss72; age twenty, dancing around a dorm room. “I know. Sowe have to make sure that she doesn’t.”
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inflate
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| vt.使膨胀，使骄傲，抬高（物价） | |
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coxcomb
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forth
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knight
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mowing
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catastrophe
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| n.大灾难，大祸 | |
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antidote
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| n.解毒药，解毒剂 | |
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justified
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| a.正当的，有理的 | |
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carvings
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| n.雕刻( carving的名词复数 )；雕刻术；雕刻品；雕刻物 | |
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beads
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psychiatrists
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| n.精神病专家，精神病医生( psychiatrist的名词复数 ) | |
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trickier
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| adj.狡猾的( tricky的比较级 )；（形势、工作等）复杂的；机警的；微妙的 | |
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nausea
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vomiting
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consolidation
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marrow
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| n.骨髓；精华；活力 | |
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aspiration
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vigilant
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molecular
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siblings
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sibling
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donor
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succumbs
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distress
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veins
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inevitably
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dabbing
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rinsing
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| n.清水，残渣v.漂洗( rinse的现在分词 )；冲洗；用清水漂洗掉（肥皂泡等）；（用清水）冲掉 | |
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34
tsunami
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| n.海啸 | |
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analyze
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| vt.分析，解析 (=analyse) | |
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odds
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| n.让步，机率，可能性，比率；胜败优劣之别 | |
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withered
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| adj. 枯萎的，干瘪的，（人身体的部分器官）因病萎缩的或未发育良好的 动词wither的过去式和过去分词形式 | |
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orchids
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| n.兰花( orchid的名词复数 ) | |
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ward
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| n.守卫，监护，病房，行政区，由监护人或法院保护的人（尤指儿童）；vt.守护，躲开 | |
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plunge
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| v.跳入，(使)投入，(使)陷入；猛冲 | |
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conversationally
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| adv.会话地 | |
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neatly
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| adv.整洁地，干净地，灵巧地，熟练地 | |
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induction
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| n.感应，感应现象 | |
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clump
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| n.树丛，草丛；vi.用沉重的脚步行走 | |
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blizzard
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| n.暴风雪 | |
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abruptly
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| adv.突然地，出其不意地 | |
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awakened
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| v.（使）醒( awaken的过去式和过去分词 )；（使）觉醒；弄醒；（使）意识到 | |
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bustle
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| v.喧扰地忙乱，匆忙，奔忙；n.忙碌；喧闹 | |
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hover
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| vi.翱翔，盘旋；徘徊；彷徨，犹豫 | |
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feverish
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| adj.发烧的，狂热的，兴奋的 | |
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spinal
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| adj.针的，尖刺的，尖刺状突起的；adj.脊骨的，脊髓的 | |
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isolate
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| vt.使孤立，隔离 | |
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afterward
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| adv.后来；以后 | |
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ribs
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| n.肋骨( rib的名词复数 )；（船或屋顶等的）肋拱；肋骨状的东西；（织物的）凸条花纹 | |
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blot
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| vt.弄脏（用吸墨纸）吸干；n.污点，污渍 | |
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tumor
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| n.（肿）瘤，肿块(英)tumour | |
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nadir
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| n.最低点，无底 | |
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secretion
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| n.分泌 | |
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antibiotics
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| n.（用作复数）抗生素；（用作单数）抗生物质的研究；抗生素，抗菌素( antibiotic的名词复数 ) | |
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60
juggles
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| v.歪曲( juggle的第三人称单数 )；耍弄；有效地组织；尽力同时应付（两个或两个以上的重要工作或活动） | |
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pajamas
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| n.睡衣裤 | |
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slit
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| n.狭长的切口；裂缝；vt.切开，撕裂 | |
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inflated
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| adj.（价格）飞涨的；（通货）膨胀的；言过其实的；充了气的v.使充气（于轮胎、气球等）( inflate的过去式和过去分词 )；（使）膨胀；（使）通货膨胀；物价上涨 | |
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blur
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| n.模糊不清的事物；vt.使模糊，使看不清楚 | |
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obliterate
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| v.擦去，涂抹，去掉...痕迹，消失，除去 | |
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maternity
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| n.母性，母道，妇产科病房；adj.孕妇的，母性的 | |
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soothes
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| v.安慰( soothe的第三人称单数 )；抚慰；使舒服；减轻痛苦 | |
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tilt
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| v.(使)倾侧；(使)倾斜；n.倾侧；倾斜 | |
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bullies
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| n.欺凌弱小者, 开球 vt.恐吓, 威胁, 欺负 | |
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basking
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| v.晒太阳，取暖( bask的现在分词 )；对…感到乐趣；因他人的功绩而出名；仰仗…的余泽 | |
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71
rustling
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| n. 瑟瑟声，沙沙声 adj. 发沙沙声的 | |
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gloss
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| n.光泽，光滑；虚饰；注释；vt.加光泽于；掩饰 | |
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