Sara
1996
AT EIGHT, KATE IS A LONG TANGLE of arms and legs, sometimes resembling a creature made of sunlight andpipe cleaners more than she does a little girl. I stick my head into her room for the third time that morning, tofind her in yet a different outfit. This one is a dress, white with red cherries printed across it. “You’re going tobe late for your own birthday party,” I tell her.
Thrashing her way out of the halter top, Kate strips off the dress. “I look like an ice cream sundae.”
“There are worse things,” I point out.
“If you were me, would you wear the pink skirt or the striped one?”
I look at them both, puddles on the floor. “The pink one.”
“You don’t like the stripes?”
“Then wear that one.”
“I’m going to wear the cherries,” she decides, and she turns around to grab it. On the back of her thigh is abruise the size of a half-dollar, a cherry that has stained its way through the fabric.
“Kate,” I ask, “what’s that?”
Twisting around, she looks at the spot where I point. “I guess I banged it.”
For five years, Kate has been in remission. At first, when the cord blood transplant seemed to be working, Ikept waiting for someone to tell me this was all a mistake. When Kate complained that her feet hurt, I rushedher to Dr. Chance, certain this was the bony pain of recurrence, only to find out that she’d outgrown hersneakers. When she fell down, instead of kissing her scrapes, I’d ask her if her platelets were good.
A bruise is created when there is bleeding in tissues beneath the skin, usually—but not always—the result ofa trauma.
It has been five whole years, did I mention that?
Anna sticks her head into the room. “Daddy says the first car just pulled up and if Kate wants to come downwearing a flour sack he doesn’t care. What’s a flour sack?”
Kate finishes hiking the sundress over her head, then pulls up the hem and rubs the bruise. “Huh,” she says.
Downstairs, there are twenty-five second-graders, a cake in the shape of a unicorn, and a local college kidhired to make swords and bears and crowns out of balloons. Kate opens her presents—necklaces made ofglittery beads, craft kits, Barbie paraphernalia. She saves the biggest box for last—the one Brian and I havegotten her. Inside a glass bowl swims a fantail goldfish.
Kate has wanted a pet forever. But Brian is allergic to cats, and dogs require a lot of attention, which led us tothis. Kate could not be happier. She carries him around for the rest of the party. She names him Hercules.
After the party, when we are cleaning up, I find myself staring at the goldfish. Bright as a penny, he swims incircles, happy to be going nowhere.
It takes only thirty seconds to realize that you will be canceling all your plans, erasing whatever you had beencocky enough to schedule on your calendar. It takes sixty seconds to understand that even if you’d beenfooled into thinking so, you do not have an ordinary life.
A routine bone marrow aspiration—one we’d scheduled long before I ever saw that bruise—has come backwith some abnormal promyelocytes floating around. Then a polymerase chain reaction test—one that allowsthe study of DNA—showed that in Kate, the 15 and 17 chromosomes were translocated.
All of this means that Kate is in molecular relapse now, and clinical symptoms can’t be that far behind.
Maybe she won’t present with blasts for a month. Maybe we won’t find blood in her urine or stools for ayear. But inevitably, it will happen.
They say that word, relapse, like they might say birthday or tax deadline, something that happens so routinelyit has become part of your internal calendar, whether you want it to or not.
Dr. Chance has explained that this is one of the great debates for oncologists—do you fix a wheel that isn’tbroken, or do you wait until the cart collapses? He recommends that we put Kate on ALL-TRANS RetinoicAcid. It comes in a pill half the size of my thumb, and was basically stolen from ancient Chinese medicswho’d been using it for years. Unlike chemotherapies, which go in and kill everything in their path, ATRAheads right for chromosome 17. Since the translocation of chromosomes 15 and 17 is in part what keepspromyelocyte maturation from happening correctly, ATRA helps uncoil the genes that have bound themselvestogether…and stops the abnormalities from going further.
Dr. Chance says the ATRA may put Kate back into remission.
Then again, she might develop a resistance to it.
“Mom?” Jesse comes into the living room, where I am sitting on the couch. I’ve been there for hours now. Ican’t seem to make myself get up and do any of the things I am supposed to, because what is the point ofpacking school lunches or hemming a pair of pants or even paying the heating bill?
“Mom,” Jesse says again. “You didn’t forget, did you?”
I look at him as if he is speaking Greek. “What?”
“You said you’d take me to buy new cleats after we go to the orthodontist. You promised.”
Yes, I did. Because soccer starts two days from now, and Jesse’s outgrown his old pair. But now I do notknow if I can drag myself to the orthodontist’s, where the receptionist will smile at Kate and tell me, like shealways does, how beautiful my children are. And there is something about the thought of going to SportsAuthority that seems downright obscene.
“I’m canceling the orthodontist appointment,” I say.
“Cool!” He smiles, his silver mouth glinting. “Can we just go get the cleats?”
“Now is not a good time.”
“But—”
“Jesse. Let. It. Go.”
“I can’t play if I don’t get new shoes. And you’re not even doing anything. You’re just sitting here.”
“Your sister,” I say evenly, “is incredibly sick. I’m sorry if that interferes with your dentist’s appointment oryour plan to go buy a pair of cleats. But those don’t rate quite as high in the grand scheme of things rightnow. I’d think that since you’re ten, you might be able to grow up enough to realize that the whole worlddoesn’t always revolve around you.”
Jesse looks out the window, where Kate straddles the arm of an oak tree, coaching Anna in how to climb up.
“Yeah, right, she’s sick,” he says. “Why don’t you grow up? Why don’t you figure out that the world doesn’trevolve around her?”
For the first time in my life I begin to understand how a parent might hit a child—it’s because you can lookinto their eyes and see a reflection of yourself that you wish you hadn’t. Jesse runs upstairs to slam the doorto his bedroom.
I close my eyes, take a few deep breaths. And it strikes me: not everyone dies of old age. People get run overby cars. People crash in airplanes. People choke on peanuts. There are no guarantees about anything, least ofall one’s future.
With a sigh I walk upstairs, knock on my son’s door. He has just recently discovered music; it throbs throughthe thin line of light at the base of the door. As Jesse turns down the stereo the notes flatten abruptly. “What.”
“I’d like to talk to you. I’d like to apologize.”
There is a scuffle on the other side of the door, and then it swings open. Blood covers Jesse’s mouth, avampire’s lipstick; bits of wire stick out like a seamstress’s pins. I notice the fork he is holding, and realizethis is what he has used to pull off his braces. “Now you never have to take me anywhere,” he says.
Two weeks go by with Kate on ATRA. “Did you know,” Jesse says one day, while I am getting her pill ready,“a giant tortoise can live for 177 years?” He is on a Ripley’s Believe It or Not kick. “An Arctic clam can livefor 220 years.”
Anna sits at the counter, eating peanut butter with a spoon. “What’s an Arctic clam?”
“Who cares?” Jesse says. “A parrot can live for eighty years. A cat can live for thirty.”
“How about Hercules?” Kate asks.
“It says in my book that with good care, a goldfish can live for seven years.”
Jesse watches Kate put the pill on her tongue, take a swig of water to swallow it. “If you were Hercules,” hesays, “you’d already be dead.”
Brian and I slide into our respective chairs in Dr. Chance’s office. Five years have passed, but the seats fitlike an old baseball glove. Even the photographs on the oncologist’s desk have not changed—his wife iswearing the same broad-brimmed hat on a rocky Newport jetty; his son is frozen at age six, holding aspeckled trout—contributing to the feeling that in spite of what I believed, we never really left here.
The ATRA worked. For a month, Kate reverted to molecular remission. And then a CBC turned up morepromyelocytes in her blood.
“We can keep pulsing her with ATRA,” Dr. Chance says, “but I think that its failure already tells us she’smaxed out that course.”
“What about a bone marrow transplant?”
“That’s a risky call—particularly for a child who still isn’t showing symptoms of a full-blown clinicalrelapse.” Dr. Chance looks at us. “There’s something else we can try first. It’s called a donor lymphocyteinfusion—a DLI. Sometimes a transfusion of white blood cells from a matched donor can help the originalclone of cord blood cells fight the leukemia cells. Think of them as a relief army, supporting the front line.”
“Will it put her into remission?” Brian asks.
Dr. Chance shakes his head. “It’s a stop-gap measure—Kate will, in all probability, have a full-fledgedrelapse—but it buys time to build up her defenses before we have to rush into a more aggressive treatment.”
“And how long will it take to get the lymphocytes here?” I ask.
Dr. Chance turns to me. “That depends. How soon can you bring in Anna?”
When the elevator doors open there is only one other person inside it, a homeless man with electric bluesunglasses and six plastic grocery bags filled with rags. “Close the doors, dammit,” he yells as soon as westep inside. “Can’t you see I’m blind?”
I push the button for the lobby. “I can take Anna in after school. Kindergarten gets out at noon tomorrow.”
“Don’t touch my bag,” the homeless man growls.
“I didn’t,” I answer, distant and polite.
“I don’t think you should,” Brian says.
“I’m nowhere near him!”
“Sara, I meant the DLI. I don’t think you should take Anna in to donate blood.”
For no reason at all, the elevator stops on the eleventh floor, then closes again.
The homeless man begins to rummage in his plastic bags. “When we had Anna,” I remind Brian, “we knewthat she was going to be a donor for Kate.”
“Once. And she doesn’t have any memory of us doing that to her.”
I wait until he looks at me. “Would you give blood for Kate?”
“Jesus, Sara, what kind of question—”
“I would, too. I’d give her half my heart, for God’s sake, if it helped. You do whatever you have to, when itcomes to people you love, right?” Brian ducks his head, nods. “What makes you think that Anna would feelany different?”
The elevator doors open, but Brian and I remain inside, staring at each other. From the back, the homelessman shoves between us, his bounty rustling in his arms. “Stop yelling,” he shouts, though we stand in uttersilence. “Can’t you tell that I’m deaf?”
To Anna, it is a holiday. Her mother and father are spending time with her, alone. She gets to hold both of ourhands the whole way across the parking lot. So what if we’re going to a hospital?
I have explained to her that Kate isn’t feeling good, and that the doctors need to take something from Annaand give it to Kate to make her feel better. I figured that was more than enough information.
We wait in the examination room, coloring line drawings of pterodactyls and T-Rexes. “Today at snack Ethansaid that the dinosaurs all died because they got a cold,” Anna says, “but no one believed him.”
Brian grins. “Why do you think they died?”
“Because, duh, they were a million years old.” She looks up at him. “Did they have birthday parties backthen?”
The door opens, and the hematologist comes in. “Hello, gang. Mom, you want to hold her on your lap?”
So I crawl onto the table and settle Anna in my arms. Brian gets stationed behind us, so that he can grabAnna’s shoulder and elbow and keep it immobilized. “You ready?” the doctor asks Anna, who is still smiling.
And then she holds up a syringe.
“It’s only a little stick,” the doctor promises, exactly the wrong words, and Anna starts thrashing. Her armsclip me in the face, the belly. Brian cannot grab hold of her. Over her screams, he yells at me. “I thought youtold her!”
The doctor, who’s left the room without me even noticing, returns with several nurses in tow. “Kids andphlebotomy never mix well,” she says, as the nurses slide Anna off my lap and soothe her with their softhands and softer words. “Don’t worry; we’re pros.”
It is a déjà vu, just like the day Kate was diagnosed. Be careful what you wish for, I think. Anna is just likeher sister.
I’m vacuuming the girls’ room when the handle of the Electrolux smacks Hercules’ bowl and sends the fishflying. No glass breaks, but it takes me a moment to find him, thrashing himself dry on the carpet beneathKate’s desk.
“Hang on, buddy,” I whisper, and I flip him into the bowl. I fill it with water from the bathroom sink.
He floats to the top. Don’t, I think. Please.
I sit down on the edge of the bed. How can I possibly tell Kate I’ve killed her fish? Will she notice if I run tothe pet store and get a replacement?
Suddenly Anna is next to me, home from morning kindergarten. “Mommy? How come Hercules isn’tmoving?”
I open my mouth, a confession melting on my tongue. But at that moment the goldfish shudders sideways,dives, and starts to swim again. “There,” I say. “He’s fine.”
When five thousand lymphocytes don’t seem to be enough, Dr. Chance calls for ten thousand. Anna’sappointment for a second donor lymphocyte draw falls in the middle of the gymnastics birthday party of agirl in her class. I agree to let her go for a little while, and then drive to the hospital from the gym.
The girl is a sugar-spun princess with fairy-white hair, a tiny replica of her mother. As I slip off my shoes totrek across the padded floor, I try desperately to remember their names. The child is…Mallory. And themother is…Monica? Margaret?
I spot Anna right away, sitting on the trampoline as an instructor bounces them up and down like popcorn.
The mother comes over to me, a smile strung on her face like a row of Christmas lights. “You must be Anna’smom. I’m Mittie,” she says. “I’m so sorry she has to leave, but of course, we understand. It must be amazing,going somewhere no one else ever gets to go.”
The hospital? “Well, just hope you never have to do the same.”
“Oh, I know. I get dizzy going up an elevator.” She turns to the trampoline. “Anna, honey! Your mother’shere!”
Anna barrels across the padded floor. This is exactly what I’d wanted to do to my living room when the kidswere all small: cushion the walls and floor and ceiling for protection. And yet it turned out that I could haverolled Kate in bubble wrap, the danger for her was already under the skin.
“What do you say?” I prompt, and Anna thanks Mallory’s mother.
“Oh, you’re welcome.” She hands Anna a small bag of treats. “Now, have your husband call us anytime.
We’d be happy to take Anna while you’re in Texas.”
Anna hesitates in the middle of a shoelace knot. “Mittie?” I ask, “what exactly did Anna tell you?”
“That she had to leave early so your whole family could take you to the airport. Because once training startsin Houston, you won’t see them until after the flight.”
“The flight?”
“On the space shuttle…?”
For a moment I am stunned—that Anna would make up such a ridiculous story, that this woman wouldbelieve it. “I’m not an astronaut,” I confess. “I don’t know why Anna would even say something like that.”
I pull Anna to her feet, one shoelace still untied. Dragging her out of the gymnasium, we reach the car beforeI say a word. “Why did you lie to her?”
Anna scowls. “Why did I have to leave the party?”
Because your sister is more important than cake and ice cream; because I cannot do this for her; because Isaid so.
I’m so angry that I have to try twice before I can unlock the van. “Stop acting like a five-year-old,” I accuse,and then I remember that’s exactly what she is.
“It was so hot,” Brian says, “a silver tea set melted. Pencils were bent in half.”
I look up from the newspaper. “How did it start?”
“Cat and dog chasing each other, when the owners were on vacation. They turned on a Jenn-Air range.” Hepeels his jeans down, winces. “I got second-degree burns just kneeling on the roof.”
His skin is raw, blistered. I watch him apply Neosporin and gauze. He keeps talking, telling me somethingabout a rookie nicknamed Caesar who just joined their company. But my eyes are drawn to the advicecolumn in the newspaper:
Dear Abby,Every time my mother-in-law visits, she insists on cleaning out the refrigerator. My husband says she’s justtrying to help, but it makes me feel like I’m being judged. She’s made my life a wreck. How do I make thiswoman stop without ruining my marriage?
Sincerely,Past My Expiration Date,SeattleWhat sort of woman considers this to be her biggest problem? I picture her scrawling out a note to DearAbby on linen-blend stationery. I wonder if she’s ever felt a baby turn inside her, tiny hands and feet walkingin slow circles, as if the inside of a mother is a place to be carefully mapped.
“What are you glued to?” Brian asks, coming to read the column over my shoulder.
I shake my head in disbelief. “A woman whose life is being ruined by rings from jelly jars.”
“Cream gone bad,” Brian adds, chuckling.
“Slimy lettuce. Oh my God, how can she stand to be alive?” We both start laughing then. Contagious, all wehave to do is look at each other to laugh even harder.
And then just as suddenly as all this was funny, it isn’t anymore. Not all of us live in a world where ourrefrigerator contents are the barometer for our personal happiness. Some of us work in buildings that areburning down around us. Some of us have little girls who are dying. “Slimy fucking lettuce,” I say, my voicehitching. “It’s not fair.”
Brian is across the room in an instant; he folds me into his embrace. “It never is, baby,” he answers.
spaceOne month later, we go back for a third lymphocyte donation. Anna and I take our seats in the doctor’s office,waiting to be called. After a few minutes, she tugs on my sleeve. “Mommy,” she says.
I glance down at her. Anna is swinging her feet. On her fingernails is Kate’s mood-changing nailpolish.
“What?”
She smiles up at me. “In case I forget to tell you after, it wasn’t as bad as I thought it was going to be.”
One day my sister arrives unannounced, and with Brian’s permission, spirits me away to a penthouse suite atthe Ritz Carlton in Boston. “We can do anything you want,” she tells me. “Art museums, Freedom Trailwalks, dinners out on the Harbor.” But what I really want to do is just forget, and so three hours later I amsitting on the floor beside her, finishing our second $100 bottle of wine.
I lift the bottle by its neck. “I could have bought a dress with this.”
Zanne snorts. “At Filene’s Basement, maybe.” Her feet are on a brocade chair; her body is sprawled on thewhite carpet. On the TV, Oprah counsels us to minimize our lives. “Plus, when you zip up a great Pinot Noir,you never look fat.”
I look over at her, suddenly feeling sorry for myself.
“No. You’re not doing the crying thing. Crying is not included in the room rate.”
But suddenly all I can think of is how stupid the women on Oprah sound, with their stuffed Filofaxes andcrammed closets. I wonder what Brian made for dinner. If Kate’s all right. “I’m going to call home.”
She comes up on an elbow. “You are allowed to take a break, you know. No one has to be a martyr twenty-four/seven.”
But I hear her wrong. “I think once you sign on to be a mother, that’s the only shift they offer.”
“I said martyr,” Zanne laughs. “Not mother.”
I smile a little. “Is there a difference?”
She takes the telephone receiver out of my hand. “Did you want to get your crown of thorns out of thesuitcase first? Listen to yourself, Sara, and stop being such a drama queen. Yes, you drew a bad lot of fate.
Yes, it sucks to be you.”
Bright color rises on my cheeks. “You have no idea what my life is like.”
“Neither do you,” Zanne says. “You’re not living, Sara. You’re waiting for Kate to die.”
“I am not—” I begin, but then I stop. The thing is, I am.
Zanne strokes my hair and lets me cry. “It is so hard sometimes,” I confess, words I have not said to anyone,not even Brian.
“As long as it’s not all the time,” Zanne says. “Honey, Kate is not going to die sooner because you have onemore glass of wine, or because you stay overnight in a hotel, or because you let yourself crack up at a badjoke. So sit your ass back down and turn up the volume and act like you’re a normal person.”
I look around at the opulence of the room, at our decadent sprawl of wine bottles and chocolate strawberries.
“Zanne,” I say, wiping my eyes, “this is not what normal people do.”
She follows my gaze. “You’re absolutely right.” She picks up the remote control, flipping channels until shefinds Jerry Springer. “That better?”
I start to laugh, and then she starts to laugh, and soon the room is spinning around me and we are lying on ourbacks, staring up at the crown molding edging the ceiling. I suddenly remember how, when we were kids,Zanne used to always walk ahead of me to the bus stop. I could have run and caught up—but I never did. Ionly wanted to follow her.
Laughter rises like steam, swims through the windows. After three days of a torrential downpour, the kids aredelighted to be outside, kicking around a soccer ball with Brian. When life is normal, it is so normal.
I duck into Jesse’s room, trying to navigate strewn LEGO pieces and comic books so that I can set his cleanclothes down on the bed. Then I go into Kate and Anna’s room, and separate their folded laundry.
When I place Kate’s T-shirts on her dresser I see it: Hercules is swimming upside down. I reach into the bowland turn him, holding his tail; he wafts for a few strokes and then floats slowly to the surface, white-belliedand gasping.
I remember Jesse saying that with good care, a fish might live seven years. This has only been seven months.
After carrying the fishbowl into my bedroom, I pick up the phone and dial Information. “Petco,” I say.
When I’m connected, I ask a clerk about Hercules. “Do you, like, want to buy a new fish?” she asks.
“No, I want to save this one.”
“Ma’am,” the girl says, “we’re talking about a goldfish, right?”
So I call three vets, none of whom treat fish. I watch Hercules in his death throes for another minute, andthen ring the oceanography department at URI, asking for any professor that’s available.
Dr. Orestes studies tide pools, he tells me. Mollusks and shell-fish and sea urchins, not goldfish. But I findmyself telling him about my daughter, who has APL. About Hercules, who survived once against all odds.
The marine biologist is silent for a moment. “Have you changed his water?”
“This morning.”
“You get a lot of rain down there the past couple of days?”
“Yes.”
“Got a well?”
What does that have to do with anything? “Yes…”
“It’s just a hunch, but with runoff, your water might have too many minerals in it. Fill the bowl with bottledwater, and maybe he’ll perk up.”
So I empty out Hercules’ bowl, scrub it, and add a half-gallon of Poland Spring. It takes twenty minutes, butthen Hercules begins to swim around. He navigates between the lobes of the fake plant. He nibbles at food.
Kate finds me watching him a half hour later. “You didn’t have to change the water. I did it this morning.”
“Oh, I didn’t know,” I lie.
She presses her face up to the glass bowl, her smile magnified. “Jesse says goldfish can only pay attention fornine seconds,” Kate says, “but I think Hercules knows exactly who I am.”
I touch her hair. And wonder if I have used up my miracle.
1996
AT EIGHT, KATE IS A LONG TANGLE of arms and legs, sometimes resembling a creature made of sunlight andpipe cleaners more than she does a little girl. I stick my head into her room for the third time that morning, tofind her in yet a different outfit. This one is a dress, white with red cherries printed across it. “You’re going tobe late for your own birthday party,” I tell her.
Thrashing her way out of the halter top, Kate strips off the dress. “I look like an ice cream sundae.”
“There are worse things,” I point out.
“If you were me, would you wear the pink skirt or the striped one?”
I look at them both, puddles on the floor. “The pink one.”
“You don’t like the stripes?”
“Then wear that one.”
“I’m going to wear the cherries,” she decides, and she turns around to grab it. On the back of her thigh is abruise the size of a half-dollar, a cherry that has stained its way through the fabric.
“Kate,” I ask, “what’s that?”
Twisting around, she looks at the spot where I point. “I guess I banged it.”
For five years, Kate has been in remission. At first, when the cord blood transplant seemed to be working, Ikept waiting for someone to tell me this was all a mistake. When Kate complained that her feet hurt, I rushedher to Dr. Chance, certain this was the bony pain of recurrence, only to find out that she’d outgrown hersneakers. When she fell down, instead of kissing her scrapes, I’d ask her if her platelets were good.
A bruise is created when there is bleeding in tissues beneath the skin, usually—but not always—the result ofa trauma.
It has been five whole years, did I mention that?
Anna sticks her head into the room. “Daddy says the first car just pulled up and if Kate wants to come downwearing a flour sack he doesn’t care. What’s a flour sack?”
Kate finishes hiking the sundress over her head, then pulls up the hem and rubs the bruise. “Huh,” she says.
Downstairs, there are twenty-five second-graders, a cake in the shape of a unicorn, and a local college kidhired to make swords and bears and crowns out of balloons. Kate opens her presents—necklaces made ofglittery beads, craft kits, Barbie paraphernalia. She saves the biggest box for last—the one Brian and I havegotten her. Inside a glass bowl swims a fantail goldfish.
Kate has wanted a pet forever. But Brian is allergic to cats, and dogs require a lot of attention, which led us tothis. Kate could not be happier. She carries him around for the rest of the party. She names him Hercules.
After the party, when we are cleaning up, I find myself staring at the goldfish. Bright as a penny, he swims incircles, happy to be going nowhere.
It takes only thirty seconds to realize that you will be canceling all your plans, erasing whatever you had beencocky enough to schedule on your calendar. It takes sixty seconds to understand that even if you’d beenfooled into thinking so, you do not have an ordinary life.
A routine bone marrow aspiration—one we’d scheduled long before I ever saw that bruise—has come backwith some abnormal promyelocytes floating around. Then a polymerase chain reaction test—one that allowsthe study of DNA—showed that in Kate, the 15 and 17 chromosomes were translocated.
All of this means that Kate is in molecular relapse now, and clinical symptoms can’t be that far behind.
Maybe she won’t present with blasts for a month. Maybe we won’t find blood in her urine or stools for ayear. But inevitably, it will happen.
They say that word, relapse, like they might say birthday or tax deadline, something that happens so routinelyit has become part of your internal calendar, whether you want it to or not.
Dr. Chance has explained that this is one of the great debates for oncologists—do you fix a wheel that isn’tbroken, or do you wait until the cart collapses? He recommends that we put Kate on ALL-TRANS RetinoicAcid. It comes in a pill half the size of my thumb, and was basically stolen from ancient Chinese medicswho’d been using it for years. Unlike chemotherapies, which go in and kill everything in their path, ATRAheads right for chromosome 17. Since the translocation of chromosomes 15 and 17 is in part what keepspromyelocyte maturation from happening correctly, ATRA helps uncoil the genes that have bound themselvestogether…and stops the abnormalities from going further.
Dr. Chance says the ATRA may put Kate back into remission.
Then again, she might develop a resistance to it.
“Mom?” Jesse comes into the living room, where I am sitting on the couch. I’ve been there for hours now. Ican’t seem to make myself get up and do any of the things I am supposed to, because what is the point ofpacking school lunches or hemming a pair of pants or even paying the heating bill?
“Mom,” Jesse says again. “You didn’t forget, did you?”
I look at him as if he is speaking Greek. “What?”
“You said you’d take me to buy new cleats after we go to the orthodontist. You promised.”
Yes, I did. Because soccer starts two days from now, and Jesse’s outgrown his old pair. But now I do notknow if I can drag myself to the orthodontist’s, where the receptionist will smile at Kate and tell me, like shealways does, how beautiful my children are. And there is something about the thought of going to SportsAuthority that seems downright obscene.
“I’m canceling the orthodontist appointment,” I say.
“Cool!” He smiles, his silver mouth glinting. “Can we just go get the cleats?”
“Now is not a good time.”
“But—”
“Jesse. Let. It. Go.”
“I can’t play if I don’t get new shoes. And you’re not even doing anything. You’re just sitting here.”
“Your sister,” I say evenly, “is incredibly sick. I’m sorry if that interferes with your dentist’s appointment oryour plan to go buy a pair of cleats. But those don’t rate quite as high in the grand scheme of things rightnow. I’d think that since you’re ten, you might be able to grow up enough to realize that the whole worlddoesn’t always revolve around you.”
Jesse looks out the window, where Kate straddles the arm of an oak tree, coaching Anna in how to climb up.
“Yeah, right, she’s sick,” he says. “Why don’t you grow up? Why don’t you figure out that the world doesn’trevolve around her?”
For the first time in my life I begin to understand how a parent might hit a child—it’s because you can lookinto their eyes and see a reflection of yourself that you wish you hadn’t. Jesse runs upstairs to slam the doorto his bedroom.
I close my eyes, take a few deep breaths. And it strikes me: not everyone dies of old age. People get run overby cars. People crash in airplanes. People choke on peanuts. There are no guarantees about anything, least ofall one’s future.
With a sigh I walk upstairs, knock on my son’s door. He has just recently discovered music; it throbs throughthe thin line of light at the base of the door. As Jesse turns down the stereo the notes flatten abruptly. “What.”
“I’d like to talk to you. I’d like to apologize.”
There is a scuffle on the other side of the door, and then it swings open. Blood covers Jesse’s mouth, avampire’s lipstick; bits of wire stick out like a seamstress’s pins. I notice the fork he is holding, and realizethis is what he has used to pull off his braces. “Now you never have to take me anywhere,” he says.
Two weeks go by with Kate on ATRA. “Did you know,” Jesse says one day, while I am getting her pill ready,“a giant tortoise can live for 177 years?” He is on a Ripley’s Believe It or Not kick. “An Arctic clam can livefor 220 years.”
Anna sits at the counter, eating peanut butter with a spoon. “What’s an Arctic clam?”
“Who cares?” Jesse says. “A parrot can live for eighty years. A cat can live for thirty.”
“How about Hercules?” Kate asks.
“It says in my book that with good care, a goldfish can live for seven years.”
Jesse watches Kate put the pill on her tongue, take a swig of water to swallow it. “If you were Hercules,” hesays, “you’d already be dead.”
Brian and I slide into our respective chairs in Dr. Chance’s office. Five years have passed, but the seats fitlike an old baseball glove. Even the photographs on the oncologist’s desk have not changed—his wife iswearing the same broad-brimmed hat on a rocky Newport jetty; his son is frozen at age six, holding aspeckled trout—contributing to the feeling that in spite of what I believed, we never really left here.
The ATRA worked. For a month, Kate reverted to molecular remission. And then a CBC turned up morepromyelocytes in her blood.
“We can keep pulsing her with ATRA,” Dr. Chance says, “but I think that its failure already tells us she’smaxed out that course.”
“What about a bone marrow transplant?”
“That’s a risky call—particularly for a child who still isn’t showing symptoms of a full-blown clinicalrelapse.” Dr. Chance looks at us. “There’s something else we can try first. It’s called a donor lymphocyteinfusion—a DLI. Sometimes a transfusion of white blood cells from a matched donor can help the originalclone of cord blood cells fight the leukemia cells. Think of them as a relief army, supporting the front line.”
“Will it put her into remission?” Brian asks.
Dr. Chance shakes his head. “It’s a stop-gap measure—Kate will, in all probability, have a full-fledgedrelapse—but it buys time to build up her defenses before we have to rush into a more aggressive treatment.”
“And how long will it take to get the lymphocytes here?” I ask.
Dr. Chance turns to me. “That depends. How soon can you bring in Anna?”
When the elevator doors open there is only one other person inside it, a homeless man with electric bluesunglasses and six plastic grocery bags filled with rags. “Close the doors, dammit,” he yells as soon as westep inside. “Can’t you see I’m blind?”
I push the button for the lobby. “I can take Anna in after school. Kindergarten gets out at noon tomorrow.”
“Don’t touch my bag,” the homeless man growls.
“I didn’t,” I answer, distant and polite.
“I don’t think you should,” Brian says.
“I’m nowhere near him!”
“Sara, I meant the DLI. I don’t think you should take Anna in to donate blood.”
For no reason at all, the elevator stops on the eleventh floor, then closes again.
The homeless man begins to rummage in his plastic bags. “When we had Anna,” I remind Brian, “we knewthat she was going to be a donor for Kate.”
“Once. And she doesn’t have any memory of us doing that to her.”
I wait until he looks at me. “Would you give blood for Kate?”
“Jesus, Sara, what kind of question—”
“I would, too. I’d give her half my heart, for God’s sake, if it helped. You do whatever you have to, when itcomes to people you love, right?” Brian ducks his head, nods. “What makes you think that Anna would feelany different?”
The elevator doors open, but Brian and I remain inside, staring at each other. From the back, the homelessman shoves between us, his bounty rustling in his arms. “Stop yelling,” he shouts, though we stand in uttersilence. “Can’t you tell that I’m deaf?”
To Anna, it is a holiday. Her mother and father are spending time with her, alone. She gets to hold both of ourhands the whole way across the parking lot. So what if we’re going to a hospital?
I have explained to her that Kate isn’t feeling good, and that the doctors need to take something from Annaand give it to Kate to make her feel better. I figured that was more than enough information.
We wait in the examination room, coloring line drawings of pterodactyls and T-Rexes. “Today at snack Ethansaid that the dinosaurs all died because they got a cold,” Anna says, “but no one believed him.”
Brian grins. “Why do you think they died?”
“Because, duh, they were a million years old.” She looks up at him. “Did they have birthday parties backthen?”
The door opens, and the hematologist comes in. “Hello, gang. Mom, you want to hold her on your lap?”
So I crawl onto the table and settle Anna in my arms. Brian gets stationed behind us, so that he can grabAnna’s shoulder and elbow and keep it immobilized. “You ready?” the doctor asks Anna, who is still smiling.
And then she holds up a syringe.
“It’s only a little stick,” the doctor promises, exactly the wrong words, and Anna starts thrashing. Her armsclip me in the face, the belly. Brian cannot grab hold of her. Over her screams, he yells at me. “I thought youtold her!”
The doctor, who’s left the room without me even noticing, returns with several nurses in tow. “Kids andphlebotomy never mix well,” she says, as the nurses slide Anna off my lap and soothe her with their softhands and softer words. “Don’t worry; we’re pros.”
It is a déjà vu, just like the day Kate was diagnosed. Be careful what you wish for, I think. Anna is just likeher sister.
I’m vacuuming the girls’ room when the handle of the Electrolux smacks Hercules’ bowl and sends the fishflying. No glass breaks, but it takes me a moment to find him, thrashing himself dry on the carpet beneathKate’s desk.
“Hang on, buddy,” I whisper, and I flip him into the bowl. I fill it with water from the bathroom sink.
He floats to the top. Don’t, I think. Please.
I sit down on the edge of the bed. How can I possibly tell Kate I’ve killed her fish? Will she notice if I run tothe pet store and get a replacement?
Suddenly Anna is next to me, home from morning kindergarten. “Mommy? How come Hercules isn’tmoving?”
I open my mouth, a confession melting on my tongue. But at that moment the goldfish shudders sideways,dives, and starts to swim again. “There,” I say. “He’s fine.”
When five thousand lymphocytes don’t seem to be enough, Dr. Chance calls for ten thousand. Anna’sappointment for a second donor lymphocyte draw falls in the middle of the gymnastics birthday party of agirl in her class. I agree to let her go for a little while, and then drive to the hospital from the gym.
The girl is a sugar-spun princess with fairy-white hair, a tiny replica of her mother. As I slip off my shoes totrek across the padded floor, I try desperately to remember their names. The child is…Mallory. And themother is…Monica? Margaret?
I spot Anna right away, sitting on the trampoline as an instructor bounces them up and down like popcorn.
The mother comes over to me, a smile strung on her face like a row of Christmas lights. “You must be Anna’smom. I’m Mittie,” she says. “I’m so sorry she has to leave, but of course, we understand. It must be amazing,going somewhere no one else ever gets to go.”
The hospital? “Well, just hope you never have to do the same.”
“Oh, I know. I get dizzy going up an elevator.” She turns to the trampoline. “Anna, honey! Your mother’shere!”
Anna barrels across the padded floor. This is exactly what I’d wanted to do to my living room when the kidswere all small: cushion the walls and floor and ceiling for protection. And yet it turned out that I could haverolled Kate in bubble wrap, the danger for her was already under the skin.
“What do you say?” I prompt, and Anna thanks Mallory’s mother.
“Oh, you’re welcome.” She hands Anna a small bag of treats. “Now, have your husband call us anytime.
We’d be happy to take Anna while you’re in Texas.”
Anna hesitates in the middle of a shoelace knot. “Mittie?” I ask, “what exactly did Anna tell you?”
“That she had to leave early so your whole family could take you to the airport. Because once training startsin Houston, you won’t see them until after the flight.”
“The flight?”
“On the space shuttle…?”
For a moment I am stunned—that Anna would make up such a ridiculous story, that this woman wouldbelieve it. “I’m not an astronaut,” I confess. “I don’t know why Anna would even say something like that.”
I pull Anna to her feet, one shoelace still untied. Dragging her out of the gymnasium, we reach the car beforeI say a word. “Why did you lie to her?”
Anna scowls. “Why did I have to leave the party?”
Because your sister is more important than cake and ice cream; because I cannot do this for her; because Isaid so.
I’m so angry that I have to try twice before I can unlock the van. “Stop acting like a five-year-old,” I accuse,and then I remember that’s exactly what she is.
“It was so hot,” Brian says, “a silver tea set melted. Pencils were bent in half.”
I look up from the newspaper. “How did it start?”
“Cat and dog chasing each other, when the owners were on vacation. They turned on a Jenn-Air range.” Hepeels his jeans down, winces. “I got second-degree burns just kneeling on the roof.”
His skin is raw, blistered. I watch him apply Neosporin and gauze. He keeps talking, telling me somethingabout a rookie nicknamed Caesar who just joined their company. But my eyes are drawn to the advicecolumn in the newspaper:
Dear Abby,Every time my mother-in-law visits, she insists on cleaning out the refrigerator. My husband says she’s justtrying to help, but it makes me feel like I’m being judged. She’s made my life a wreck. How do I make thiswoman stop without ruining my marriage?
Sincerely,Past My Expiration Date,SeattleWhat sort of woman considers this to be her biggest problem? I picture her scrawling out a note to DearAbby on linen-blend stationery. I wonder if she’s ever felt a baby turn inside her, tiny hands and feet walkingin slow circles, as if the inside of a mother is a place to be carefully mapped.
“What are you glued to?” Brian asks, coming to read the column over my shoulder.
I shake my head in disbelief. “A woman whose life is being ruined by rings from jelly jars.”
“Cream gone bad,” Brian adds, chuckling.
“Slimy lettuce. Oh my God, how can she stand to be alive?” We both start laughing then. Contagious, all wehave to do is look at each other to laugh even harder.
And then just as suddenly as all this was funny, it isn’t anymore. Not all of us live in a world where ourrefrigerator contents are the barometer for our personal happiness. Some of us work in buildings that areburning down around us. Some of us have little girls who are dying. “Slimy fucking lettuce,” I say, my voicehitching. “It’s not fair.”
Brian is across the room in an instant; he folds me into his embrace. “It never is, baby,” he answers.
spaceOne month later, we go back for a third lymphocyte donation. Anna and I take our seats in the doctor’s office,waiting to be called. After a few minutes, she tugs on my sleeve. “Mommy,” she says.
I glance down at her. Anna is swinging her feet. On her fingernails is Kate’s mood-changing nailpolish.
“What?”
She smiles up at me. “In case I forget to tell you after, it wasn’t as bad as I thought it was going to be.”
One day my sister arrives unannounced, and with Brian’s permission, spirits me away to a penthouse suite atthe Ritz Carlton in Boston. “We can do anything you want,” she tells me. “Art museums, Freedom Trailwalks, dinners out on the Harbor.” But what I really want to do is just forget, and so three hours later I amsitting on the floor beside her, finishing our second $100 bottle of wine.
I lift the bottle by its neck. “I could have bought a dress with this.”
Zanne snorts. “At Filene’s Basement, maybe.” Her feet are on a brocade chair; her body is sprawled on thewhite carpet. On the TV, Oprah counsels us to minimize our lives. “Plus, when you zip up a great Pinot Noir,you never look fat.”
I look over at her, suddenly feeling sorry for myself.
“No. You’re not doing the crying thing. Crying is not included in the room rate.”
But suddenly all I can think of is how stupid the women on Oprah sound, with their stuffed Filofaxes andcrammed closets. I wonder what Brian made for dinner. If Kate’s all right. “I’m going to call home.”
She comes up on an elbow. “You are allowed to take a break, you know. No one has to be a martyr twenty-four/seven.”
But I hear her wrong. “I think once you sign on to be a mother, that’s the only shift they offer.”
“I said martyr,” Zanne laughs. “Not mother.”
I smile a little. “Is there a difference?”
She takes the telephone receiver out of my hand. “Did you want to get your crown of thorns out of thesuitcase first? Listen to yourself, Sara, and stop being such a drama queen. Yes, you drew a bad lot of fate.
Yes, it sucks to be you.”
Bright color rises on my cheeks. “You have no idea what my life is like.”
“Neither do you,” Zanne says. “You’re not living, Sara. You’re waiting for Kate to die.”
“I am not—” I begin, but then I stop. The thing is, I am.
Zanne strokes my hair and lets me cry. “It is so hard sometimes,” I confess, words I have not said to anyone,not even Brian.
“As long as it’s not all the time,” Zanne says. “Honey, Kate is not going to die sooner because you have onemore glass of wine, or because you stay overnight in a hotel, or because you let yourself crack up at a badjoke. So sit your ass back down and turn up the volume and act like you’re a normal person.”
I look around at the opulence of the room, at our decadent sprawl of wine bottles and chocolate strawberries.
“Zanne,” I say, wiping my eyes, “this is not what normal people do.”
She follows my gaze. “You’re absolutely right.” She picks up the remote control, flipping channels until shefinds Jerry Springer. “That better?”
I start to laugh, and then she starts to laugh, and soon the room is spinning around me and we are lying on ourbacks, staring up at the crown molding edging the ceiling. I suddenly remember how, when we were kids,Zanne used to always walk ahead of me to the bus stop. I could have run and caught up—but I never did. Ionly wanted to follow her.
Laughter rises like steam, swims through the windows. After three days of a torrential downpour, the kids aredelighted to be outside, kicking around a soccer ball with Brian. When life is normal, it is so normal.
I duck into Jesse’s room, trying to navigate strewn LEGO pieces and comic books so that I can set his cleanclothes down on the bed. Then I go into Kate and Anna’s room, and separate their folded laundry.
When I place Kate’s T-shirts on her dresser I see it: Hercules is swimming upside down. I reach into the bowland turn him, holding his tail; he wafts for a few strokes and then floats slowly to the surface, white-belliedand gasping.
I remember Jesse saying that with good care, a fish might live seven years. This has only been seven months.
After carrying the fishbowl into my bedroom, I pick up the phone and dial Information. “Petco,” I say.
When I’m connected, I ask a clerk about Hercules. “Do you, like, want to buy a new fish?” she asks.
“No, I want to save this one.”
“Ma’am,” the girl says, “we’re talking about a goldfish, right?”
So I call three vets, none of whom treat fish. I watch Hercules in his death throes for another minute, andthen ring the oceanography department at URI, asking for any professor that’s available.
Dr. Orestes studies tide pools, he tells me. Mollusks and shell-fish and sea urchins, not goldfish. But I findmyself telling him about my daughter, who has APL. About Hercules, who survived once against all odds.
The marine biologist is silent for a moment. “Have you changed his water?”
“This morning.”
“You get a lot of rain down there the past couple of days?”
“Yes.”
“Got a well?”
What does that have to do with anything? “Yes…”
“It’s just a hunch, but with runoff, your water might have too many minerals in it. Fill the bowl with bottledwater, and maybe he’ll perk up.”
So I empty out Hercules’ bowl, scrub it, and add a half-gallon of Poland Spring. It takes twenty minutes, butthen Hercules begins to swim around. He navigates between the lobes of the fake plant. He nibbles at food.
Kate finds me watching him a half hour later. “You didn’t have to change the water. I did it this morning.”
“Oh, I didn’t know,” I lie.
She presses her face up to the glass bowl, her smile magnified. “Jesse says goldfish can only pay attention fornine seconds,” Kate says, “but I think Hercules knows exactly who I am.”
I touch her hair. And wonder if I have used up my miracle.