by Jodi Picoult
A bone marrow transplant costs from $100,000 upward. Needless to say, we don’t have that kind of cash lying around. But just because a doctor has recommended the transplant doesn’t mean that our insurance company 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 a recorded 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 already given 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?”
• • •
In preparation for the bone marrow harvest, I have to give Anna ongoing growth factor shots, just like I once gave Kate after her initial cord blood transplant. The intent is to hyper-pack Anna’s marrow, so that when it is time 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 the needle, but she still yells. I wonder if it hurts as much as having your six-year-old stare you in the eye and say she hates you.
• • •
“Mrs. Fitzgerald,” the insurance company’s customer service supervisor says, “we appreciate where you’re coming 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.” I have told myself that I will not lose my temper, and already thirty seconds into this phone call with the insurance company, I have ceded the battle.
“AmeriLife will pay ninety percent of what’s considered reasonable and customary for a donor lymphocyte infusion. However, should you still choose to do a bone marrow transplant, we are willing to cover ten percent 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 his class from some hack medical school in Guam could probably tell you that a DLI isn’t going to work as a cure. That three months from now, we’ll be having this same discussion again. Plus, if you’d asked a doctor who had any familiarity with my daughter’s particular disease burden, he’d tell you that repeating a treatment that’s already been tried is highly unlikely to produce results in an APL patient, because they develop a resistance. Which means that AmeriLife is basically agreeing to throw money down a toilet, but not to spend it 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 supervisor suggests, “it is my understanding that if you follow this protocol, the insurance company would have no problems 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 try a used part first and if it doesn’t work, get a new one shipped in. We’re talking about a human being. A human 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 transplant regimen. She lets Jesse help her set up her portable office, takes a phone call from Australia, and then comes into the kitchen so that Brian and I can catch her up on daily routines. “Anna’s got gymnastics on Tuesday,” I tell 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 on an 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 the transplant 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 other firefighters.” 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. The quilt is pulled tight enough to bounce a dime off its middle; the pillows have been fluffed and centered. Her stuffed animals, relics at this point, sit on the window seat in gradated succession, tallest to smallest. Even her 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 of maladies: the bite of a jellyfish, the taste of a poisonous berry, the smile of a dangerous stranger, the dive into a shallow pool. There are so many ways a child can be harmed that it seems nearly impossible one person alone 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 all night 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 a child has a fatal disease. Either you dissolve into a puddle, or you take the blow on the cheek and force yourself 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 chemo has made her throw up thirty-two times, and has given her mouth sores and such bad mucositis that she sounds 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 you rest,” 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 the ones doing the tour of duty. The doctors breeze in and out like conquering heroes, but they need to read your child’s chart to remember where they’ve left off from the previous visit. It is the nurses who are the seasoned sergeants—the ones who are there when your baby is shaking with such a high fever she needs to be bathed in ice, the ones who can teach you how to flush a central venous catheter, or suggest which patient floor kitchens might still have Popsicles left to be stolen, or tell you which dry cleaners know how to remove the stains of blood and chemotherapies from clothing. The nurses know the name of your daughter’s stuffed walrus and show her how to make tissue paper flowers to twine around her IV stand. The doctors may be mapping 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 previous life, the one before diagnosis. Donna’s daughter, for example, is studying to be a vet. Ludmilla, on the graveyard shift, wears laminated pictures of Sanibel Island clipped like charms to her stethoscope, because it’s where she wants to retire. Willie, the male nurse, has a weakness for chocolate and a wife expecting triplets.
One night during Kate’s induction, when I have been awake for so long that my body has forgotten how to segue into sleep, I turn on the TV while she sleeps. I mute it, so that the volume won’t disturb her. Robin Leach is walking through the palatial home of someone Rich and Famous. There are gold-plated bidets and hand-carved teak beds, a pool in the shape of a butterfly. There are ten-car garages and red clay tennis courts and eleven roaming peacocks. It’s a world I can’t even wrap my head around—a life I would never imagine for 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 born with congenital heart problems or any other medical burden, and to feel myself crack down the middle: half sympathetic, 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 toward the 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 myself talking. And talking. And when I have spilled all my secrets, I take a deep breath and realize that I have been talking for an hour straight. “Oh my God,” I say. “I can’t believe I’ve wasted so much of your time.”
“It wasn’t a waste,” Donna replies. “And besides, my shift ended a half hour ago.”
My cheeks flame. “You ought to go. I’m sure you have somewhere else you’d much rather be.”
But instead of leaving, Donna folds me into her ample arms. “Honey,” she says, “don’t we all?”
• • •
The door to the ambulatory operating suite yawns open into a small room packed with gleaming silver instruments—a mouth gilded with braces. The doctors and nurses she has met are masked and gowned, only recognizable by their eyes. Anna tugs at me until I kneel down beside her. “What if I changed my mind?” she says.
I put my hands on her shoulders. “You don’t have to do this if you don’t want to, but I know that Kate is counting on you. And Daddy and me.”
She nods once, then slips her hand into mine. “Don’t let go,” she tells me.
A nurse shepherds her in the right direction, onto the table. “Wait’ll you see what we’ve got for you, Anna.” She draws a heated blanket over her.
The anesthesiologist wipes a red-tinged gauze pad around an oxygen mask. “Have you ever gone to sleep in a strawberry field?”
They work their way down Anna’s body, applying gelled pads that will be hooked to monitors to track her heart and her breathing. They administer to her while she’s lying on her back, although I know they will flip her over to draw marrow from her hipbones.
The anesthesiologist shows Anna the accordion mechanism on his equipment. “Can you blow up that balloon?” he asks, and places the mask over Anna’s face.
All this time, she doesn’t let go of my hand. Finally, her grip slackens. She fights at the last minute, her body already asleep but straining forward at the shoulders. One nurse holds Anna down; the other restrains me. “It’s just the way the medicine affects the body,” she explains. “You can give her a kiss now.”
So I do, through my mask. I whisper a thank-you, too. I walk out of the swinging door and peel off my paper hat and booties. I watch through the postage-stamp window as Anna is rolled to her side and an impossibly long needle is lifted from a sterile tray.
Then I go upstairs to wait with Kate.
• • •
Brian sticks his head into Kate’s room. “Sara,” he says, exhausted, “Anna’s asking for you.”
But I cannot be in two places at one time. I hold the pink emesis basin up to Kate’s mouth as she vomits again. Beside me, Donna helps lower Kate back onto her pillow. “I’m a little busy right now,” I say.
“Anna’s asking for you,” Brian repeats, that’s all.
Donna looks from him to me. “We’ll be fine till you get back,” she promises, and after a moment, I nod.
Anna is on the pediatric floor, one that doesn’t have the hermetically sealed rooms necessary for protective isolation. I hear her crying before I even enter the room. “Mommy,” she sobs. “It hurts.”
I sit down on the side of the bed and fold her into my arms. “I know, sweetie.”
“Can you stay here?”
I shake my head. “Kate’s sick. I’m going to have to go back.”
Anna pulls away. “But I’m in the hospital,” she says. “I’m in the hospital!”
Over her head, I glance at Brian. “What are they giving her for pain?”
“Very little. The nurse said they don’t like to overmedicate kids.”
“That’s ridiculous.” When I stand, Anna whimpers and grabs for me. “Be right back, honey.”
I accost the first nurse I can find. Unlike the staff in oncology, these RNs are unfamiliar. “She was given Tylenol an hour ago,” the woman explains. “I know she’s a little uncomfortable—”
“Roxicet. Tylenol with codeine. Naproxen. And if it’s not on the doctor’s orders call and ask whether it can be put on there.”
The nurse bristles. “With all due respect, Mrs. Fitzgerald, I do this every day, and—”
“So do I.”
When I go back to Anna’s room, I am carrying a pediatric dose of Roxicet, which will either relieve her aches or knock her out so that she no longer feels them. I walk in to find Brian’s big hands fumbling a Lilliputian clasp on the back of a necklace, as he hangs a locket around Anna’s neck. “I thought you deserved your own gift, since you were giving one to your sister,” he says.
Of course Anna should be honored for donating her bone marrow. Of course she deserves recog
nition. But the thought of rewarding someone for their suffering, frankly, never entered my mind. We’ve all been doing it for so long.
They both glance up when I come through the doorway. “Look at what Daddy got me!” Anna says.
I hold out the plastic dosage cup, a poor second-best.
• • •
Shortly after ten o’clock, Brian brings Anna to Kate’s room. She moves slowly, like an old woman, leaning on Brian for support. The nurses help her into a mask and gown and gloves and booties so that she can be allowed in—a compassionate breach of protocol, as children are not usually allowed to visit protective isolation.
Dr. Chance stands beside the IV pole, holding up the bag of marrow. I turn Anna so that she can see it. “That,” I tell her, “is what you gave us.”
Anna makes a face. “It’s gross. You can have it.”
“Sounds like a plan,” Dr. Chance says, and the rich ruby marrow begins to feed into Kate’s central line.
I place Anna on the bed. There is room for both of them, shoulder to shoulder. “Did it hurt?” Kate asks.
“Kind of.” Anna points to the blood running through the plastic tubes into the slit in Kate’s chest. “Does that?”
“Not really.” She sits up a little. “Hey, Anna?”
“Yeah?”
“I’m glad it came from you.” Kate reaches for Anna’s hand and places it just below the central line’s catheter, a spot that falls precariously near her heart.
• • •
Twenty-one days after the bone marrow transplant, Kate’s white cell counts begin to rise, proof of engraftment. To celebrate, Brian insists that he is taking me out to dinner. He arranges for a private-duty nurse for Kate, makes reservations at XO Café, and even brings me a black dress from my closet. He forgets pumps, so I wind up wearing my scruffy hiking clogs with it.
The restaurant is nearly full. Almost immediately after we are seated, the sommelier comes to ask if we want wine. Brian orders a Cabernet Sauvignon.
“Do you even know whether that’s red or white?” I do not think, in all these years, I have seen Brian drink anything but beer.