My Sister's Keeper: A Novel Read online

  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