Sara
      1997



NO MATTER HOW MANY TIMES you drive to the emergency room, it never becomes routine. Brian carries ourdaughter in his arms, blood running down her face. The triage nurse waves us inside, shepherds the other kidsto the bank of plastic chairs where they can wait. A resident comes into the cubicle, all business. “Whathappened?”

“She went over the handlebars of her bike,” I said. “She landed on concrete. There doesn’t seem to be anyevidence of concussion, but there’s a scalp lac at the hairline of about an inch and a half.”

The doctor lays her down gently on the table, snaps on gloves, and peers at her forehead. “Are you a doctoror a nurse?”

I try to smile. “Just used to this.”

It takes eighty-two stitches to sew up the gash. Afterward, with a bright white patch of gauze taped to herhead, and a hefty dose of pediatric Tylenol swimming through her veins, we walk out to the waiting area,hand in hand.

Jesse asks her how many stitches she needed. Brian tells her she was just as brave as a firefighter. Kateglances at Anna’s fresh bandage. “I like it better when I get to sit out here,” she says.

spaceIt starts when Kate screams in the bathroom. I race upstairs and jimmy the lock to find my nine-year-oldstanding in front of a toilet spattered with blood. Blood runs down her legs, too, and has soaked through herunderpants. This is the calling card for APL—hemorrhage in all sorts of masks and disguises. Kate’s hadrectal bleeding before, but she was a toddler; she would not remember. “It’s all right,” I say calmly.

I get a warm washcloth to clean her up, and find a sanitary napkin for her underwear. I watch her try toposition the bulk of the pad between her legs. This is the moment I would have had with her when she got herperiod; will she live long enough for that?

“Mom,” Kate says. “It’s back.”

“Clinical relapse.” Dr. Chance takes off his glasses and presses his thumbs to the corners of his eyes. “I thinka bone marrow transplant’s the way to go.”

My mind jumps to a memory of an inflatable Bozo punching bag I had when I was Anna’s age; filled withsand at the bottom, I’d whack it only to have it pop back up.

“But a few months ago,” Brian says, “you told us they were dangerous.”

“They are. Fifty percent of patients who receive BMTs are cured. The other half don’t survive the chemo andthe radiation leading up to the transplant. Some are killed by the complications they develop after thetransplant’s done.”

Brian looks at me, and then speaks the fear that ripples between us. “Then why would we even put Kate atrisk?”

“Because if you don’t,” Dr. Chance explains, “she will die.”

spaceThe first time I call the insurance company, they hang up on me by mistake. The second time, I wait throughMuzak for twenty-two minutes before reaching a customer service representative. “Can I have your policynumber?”

I give her the one all municipal employees get, and Brian’s Social Security number. “How can I help you?”

“I spoke to someone there a week ago,” I explain. “My daughter has leukemia, and needs a bone marrowtransplant. The hospital explained that our insurance company needs to sign off on coverage.”

A bone marrow transplant costs from $100,000 upward. Needless to say, we don’t have that kind of cashlying around. But just because a doctor has recommended the transplant doesn’t mean that our insurancecompany will agree.

“That sort of procedure needs a special review—”

“Yes, I know. That’s where we were a week ago. I’m calling because I haven’t heard back from you yet.”

She puts me on hold, so that she can look up my file. I hear a subtle click, and then the tinny voice of arecorded operator. If you’d like to make a call…“Shit!” I slam down the phone.

Anna, vigilant, pokes her head around the doorway. “You said a bad word.”

“I know.” I pick up the receiver and hit the redial button. I wind my way through the touch-tone menu.

Finally, I reach a living person. “I was just disconnected. Again.”

It takes this rep five more minutes to take down all the same numbers and names and history I have alreadygiven her predecessors. “We actually have reviewed your daughter’s case,” the woman says. “Unfortunately,at this time, we don’t think that procedure is in her best interests.”

I feel heat rush to my face. “Is dying?”

spaceIn preparation for the bone marrow harvest, I have to give Anna ongoing growth factor shots, just like I oncegave Kate after her initial cord blood transplant. The intent is to hyper-pack Anna’s marrow, so that when it istime to withdraw the cells, there will be plenty for Kate.

Anna has been told this, too, but all she knows is that twice a day, her mother has to give her a shot.

We use EMLA cream, a topical anesthetic. The cream is supposed to keep her from feeling the prick of theneedle, but she still yells. I wonder if it hurts as much as having your six-year-old stare you in the eye and sayshe hates you.

“Mrs. Fitzgerald,” the insurance company’s customer service supervisor says, “we appreciate where you’recoming from. Truly.”

“Somehow, I find that very hard to believe,” I say. “Somehow I doubt that you have a daughter in a life-or-death situation, and that your advisory board isn’t looking solely at the bottom line cost of a transplant.” Ihave told myself that I will not lose my temper, and already thirty seconds into this phone call with theinsurance company, I have ceded the battle.

“AmeriLife will pay ninety percent of what’s considered reasonable and customary for a donor lymphocyteinfusion. However, should you still choose to do a bone marrow transplant, we are willing to cover tenpercent of the costs.”

I take a deep breath. “The doctors on your board who recommended this—what’s their specialty?”

“I don’t—”

“It’s not acute promyelocytic leukemia, though, is it? Because even an oncologist who graduated last in hisclass from some hack medical school in Guam could probably tell you that a DLI isn’t going to work as acure. That three months from now, we’ll be having this same discussion again. Plus, if you’d asked a doctorwho had any familiarity with my daughter’s particular disease burden, he’d tell you that repeating a treatmentthat’s already been tried is highly unlikely to produce results in an APL patient, because they develop aresistance. Which means that AmeriLife is basically agreeing to throw money down a toilet, but not to spendit on the one thing that might actually have a chance of saving my child’s life.”

There is a pregnant bubble of silence on the other end of the phone. “Mrs. Fitzgerald,” the supervisorsuggests, “it is my understanding that if you follow this protocol, the insurance company would have noproblems then paying for the transplant.”

“Except that my daughter might not be alive by then to get it. We aren’t talking about a car, where we can trya used part first and if it doesn’t work, get a new one shipped in. We’re talking about a human being. Ahuman being. Do you automatons there even know what the hell that is?”

This time, I’m expecting the click when I am disconnected.

Zanne shows up the night before we are due to go to the hospital to begin Kate’s preparatory transplantregimen. She lets Jesse help her set up her portable office, takes a phone call from Australia, and then comesinto the kitchen so that Brian and I can catch her up on daily routines. “Anna’s got gymnastics on Tuesday,” Itell her. “Three o’clock. And I expect the oil truck to come sometime this week.”

“The trash goes out on Wednesday,” Brian adds.

“Don’t walk Jesse into school. Apparently, that’s anathema for sixth-graders.”

She nods and listens and even takes notes, and then says she has a couple of questions. “The fish…”

“Gets fed twice a day. Jesse can do it, if you remind him.”

“Is there an official bedtime?” Zanne asks.

“Yeah,” I reply. “Do you want me to give you the real one, or the one you can use if you’re going to tack onan extra hour as a special treat?”

“Anna’s eight o’clock,” Brian says. “Jesse’s ten. Anything else?”

“Yes.” Zanne reaches into her pocket and takes out a check made out to us, for $100,000.

“Suzanne,” I say, stunned. “We can’t take that.”

“I know how much it costs. You can’t cover it. I can. Let me.”

Brian picks up the check and hands it back to her. “Thank you,” he says. “But actually, we’ve got thetransplant covered.”

This is news to me. “We do?”

“The guys at the station sent out a call to arms, nationwide, and got a bunch of donations from otherfirefighters.” Brian looks at me. “I just found out today.”

“Really?” Inside me a weight lifts.

He shrugs. “They’re my brothers,” he explains.

I turn to Zanne and hug her. “Thank you. For even offering.”

“It’s here if you need it,” she answers.

But we don’t. We are able to do this, at least.

“Kate!” I call the next morning. “It’s time to go!”

Anna is curled on Zanne’s lap on the couch. She pulls her thumb out of her mouth but she doesn’t say good-bye.

“Kate!” I yell again. “We’re leaving!”

Jesse smirks over his Nintendo controls. “Like you’d really take off without her.”

“She doesn’t know that. Kate!” Sighing, I swing up the stairs toward her bedroom.

The door is closed. With a soft knock, I push it open, and find Kate in the final throes of making her bed. Thequilt is pulled tight enough to bounce a dime off its middle; the pillows have been fluffed and centered. Herstuffed animals, relics at this point, sit on the window seat in gradated succession, tallest to smallest. Evenher shoes have been neatly arranged in her closet, and the mess on her desk has vanished.

“Okay.” I haven’t even asked her to clean up. “Clearly, I’m in the wrong bedroom.”

She turns. “It’s in case I don’t come back,” she says.

When I first became a parent I used to lie in bed at night and imagine the most horrible succession ofmaladies: the bite of a jellyfish, the taste of a poisonous berry, the smile of a dangerous stranger, the dive intoa shallow pool. There are so many ways a child can be harmed that it seems nearly impossible one personalone could succeed at keeping him safe. As my children got older, the hazards only changed: inhaling glue,playing with matches, small pink pills sold behind the bleachers of the middle school. You can stay up allnight and still not count all the ways to lose the people you love.

It seems to me, now that this is more than just a hypothetical, that a parent falls one of two ways when told achild has a fatal disease. Either you dissolve into a puddle, or you take the blow on the cheek and forceyourself to lift your face again for more. In this, we probably look a lot like the patients.

Kate is semi-conscious on her bed, her central line tubes blooming like a fountain from her chest. The chemohas made her throw up thirty-two times, and has given her mouth sores and such bad mucositis that shesounds like a cystic fibrosis patient.

She turns to me and tries to speak, but coughs up phlegm instead. “Drown,” she chokes out.

Raising the suction tube she’s clutching in her hands, I clear out her mouth and throat. “I’ll do it while yourest,” I promise, and that is how I come to breathe for her.

An oncology ward is a battlefield, and there are definite hierarchies of command. The patients, they’re theones doing the tour of duty. The doctors breeze in and out like conquering heroes, but they need to read yourchild’s chart to remember where they’ve left off from the previous visit. It is the nurses who are the seasonedsergeants—the ones who are there when your baby is shaking with such a high fever she needs to be bathedin ice, the ones who can teach you how to flush a central venous catheter, or suggest which patient floorkitchens might still have Popsicles left to be stolen, or tell you which dry cleaners know how to remove thestains of blood and chemotherapies from clothing. The nurses know the name of your daughter’s stuffedwalrus and show her how to make tissue paper flowers to twine around her IV stand. The doctors may bemapping out the war games, but it is the nurses who make the conflict bearable.

You get to know them as they know you, because they take the place of friends you once had in a previouslife, the one before diagnosis. Donna’s daughter, for example, is studying to be a vet. Ludmilla, on thegraveyard shift, wears laminated pictures of Sanibel Island clipped like charms to her stethoscope, becauseit’s where she wants to retire. Willie, the male nurse, has a weakness for chocolate and a wife expectingtriplets.

One night during Kate’s induction, when I have been awake for so long that my body has forgotten how tosegue into sleep, I turn on the TV while she sleeps. I mute it, so that the volume won’t disturb her. RobinLeach is walking through the palatial home of someone Rich and Famous. There are gold-plated bidets andhand-carved teak beds, a pool in the shape of a butterfly. There are ten-car garages and red clay tennis courtsand eleven roaming peacocks. It’s a world I can’t even wrap my head around—a life I would never imaginefor myself.

Sort of like this one used to be.

I can’t even really remember what it was like to hear a story about a mother with breast cancer or a baby bornwith congenital heart problems or any other medical burden, and to feel myself crack down the middle: halfsympathetic, half grateful that my own family was safe. We have become that story, for everyone else.

I don’t realize I’m crying until Donna kneels down in front of me and takes the TV remote out of my hand.

“Sara,” the nurse says, “can I get you something?”

I shake my head, embarrasseed to have broken down, even more ashamed to be caught. “I’m fine,” I insist.

“Yeah, and I’m Hillary Clinton,” she says. She reaches for my hand and tugs me upright, drags me towardthe door.

“Kate—”

“—will not even miss you,” Donna finishes.

In the small kitchenette where there is coffee brewing twenty-four hours a day, she fixes a cup for each of us.

“I’m sorry,” I say.

“For what? Not being made of granite?”

I shake my head. “It just doesn’t end.” Donna nods, and because she completely understands, I find myselftalking. And talking. And when I have spilled all my secrets, I take a deep breath and realize that I have beentalking for an hour straight. “Oh my God,” I say. “I can’t believe I’ve wasted so m............