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 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.
“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.
She is dosed with Tylenol to reduce her fever. She has blood, urine and
respiratory secretion cultures taken, so that the appropriate antibiotics can
be administered. It takes six hours before she is free of the rigors—a round 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 corn-rows one afternoon a
few weeks back, to make her 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 juggles Jesse in his
other arm. It is nearly noon, and we are all still in pajamas; 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 slit 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 so brave,” 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'd be sick.”
In my first dream, the IV fluid is dripping too quickly into Kate's central
line. The saline pumps her up from the inside out, a balloon to be inflated. I
try to pull the infusion, but it's held fast in the central line. As I watch,
Kate's features smooth, blur, obliterate, until her face is a white oval that
could be anyone at all.
In my second dream, I am in a maternity ward, giving birth. My body tunnels
in, my heart pulses low in my belly. There is a rush of pressure, and then the
baby arrives in a lightning rush and flow. “It's a girl,” the nurse
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. “Sell it,” my sister orders. “I
don't care if you have to set up a lemonade stand in Fanueil Hall and give the
shares away, Peter. I said sell.” She pushes a button and holds
out her arms to me. “Hey,” Zanne soothes when I burst 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 Zanne awkwardly. Jesse runs toward her at full tilt.
“Who's that kid you adopted, Sara… because Jesse can't possibly be that
big…” She disengages Jesse from her knees and leans down over the hospital
bed, where Kate 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 bullies a Chinese restaurant that doesn't deliver into
bringing up lunch. I sit beside Kate, basking in my sister's competence. 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,” he says.
In the hospital bed, Kate shifts, rustling the sheets. I force myself to
imagine her at age four, wearing a Halloween costume; age twelve, trying out
lip gloss; age twenty, dancing around a dorm room. “I know. So we have to
make sure that she doesn't.”
WEDNESDAY
I will read ashes for you, if you ask me.
I will look in the fire and tell you from the gray lashes
And out of the red and black tongues and stripes,
I will tell how fire comes
And how fire runs as far as the sea.
—CARL SANDBURG, “Fire Pages”
CAMPBELL
WE ARE ALL, I SUPPOSE, beholden to our parents—the question is, how much?
This is what runs through my mind while my mother jabbers on about my father's
latest affair. Not for the first time, I wish for siblings—if only so that I
would receive sunrise phone calls like this only once or twice a week, instead
of seven.
“Mother,” I interrupt, “I doubt that she's actually
sixteen.”
“You underestimate your father, Campbell.”
Maybe, but I also know that he's a federal judge. He may leer after
schoolgirls, but he'd never do anything illegal. “Mom, I'm late for court.
I'll check back in with you later,” I say, and I hang up before she can
protest.
I am not going to court, but still. Taking a deep breath, I shake my head
and find Judge staring at me. “Reason number 106 why dogs are smarter than
humans,” I say. “Once you leave the litter, you sever contact with
your mothers.”
I walk into the kitchen as I am knotting my tie. My apartment, it is a work
of art. Sleek and minimalist, but what is there is the best that money can
buy—a one-of-a-kind black leather couch; a flat screen television hanging on
the wall; a locked glass case filled with signed first editions from authors
like Hemingway and Hawthorne. My coffeemaker comes imported from Italy; my
refrigerator is subzero. I open it and find a single onion, a bottle of
ketchup, and three rolls of black-and-white film.
This, too, is no surprise—I rarely eat at home. Judge is so used to
restaurant food he wouldn't recognize kibble if it slid its way down his
throat. “What do you think?” I ask him. “Rosie's sound
good?”
He barks as I fasten his service-dog harness. Judge and I have been together
for seven years. I bought him from a breeder of police dogs, but he was
specially trained with me in mind. As for his name, well, what attorney
wouldn't want to be able to put a Judge in a crate every now and then?
Rosie's is what Starbucks wishes it was: eclectic and funky, crammed with
patrons who at any time might be reading Russian lit in its original tongue or
balancing a company's budget on a laptop or writing a screenplay while
mainlining caffeine. Judge and I usually walk there and sit at our usual table,
in the back. We order a double espresso and two chocolate croissants, and we
flirt shamelessly with Ophelia, the twenty-year-old waitress. But today, when
we walk inside, Ophelia is nowhere to be found and there is a woman sitting at our
table, feeding a toddler in a stroller a bagel. This throws me for such a loop
that Judge needs to tug me to the only spot that's free, a stool at the counter
that looks out on the street.
Seven-thirty A.M., and already this day is a bust.
A heroin-thin boy with enough rings in his eyebrows to resemble a shower
curtain rod approaches with a pad. He sees Judge at my feet. “Sorry, dude.
No dogs allowed.”
“This is a service dog,” I explain. “Where's Ophelia?”
“She's gone, man. Eloped, last night.”
Eloped? People still do that? “With whom?” I ask, though
it's none of my business.
“Some performance artist who sculpts dog crap into busts of world
leaders. It's supposed to be a statement.”
I feel a momentary pang for poor Ophelia. Take it from me: love has all the
lasting permanence of a rainbow—beautiful while it's there, and just as likely
to have disappeared by the time you blink.
The waiter reaches into his back pocket and hands me a plastic card.
“Here's the Braille menu.”
“I want a double espresso and two croissants, and I'm not blind.”
“Then what's Fido for?”
“I have SARS,” I say. “He's tallying the people I
infect.”
The waiter can't seem to figure out if I am joking. He backs away, unsure,
to get my coffee.
Unlike my normal table, this one has a view of the street. I watch an
elderly lady narrowly avoid the swipe of a taxi; a boy dances past with a radio
three times the size of his head balanced on his shoulder. Twins in parochial
school uniforms giggle behind the pages of a teen magazine. And a woman with a
running river of black hair spills coffee on her skirt, dropping the paper cup
on the pavement.
Inside me, everything stops. I wait for her to lift her face—to see if this
could possibly be who I think it is—but she turns away from me, blotting the
fabric with a napkin. A bus cuts the world in half, and my cell phone begins to
ring.