Sara
AT EIGHT, KATE IS A LONG TANGLE of arms and legs, sometimes resembling a creature made of sunlight and pipe cleaners more than she does a little girl.
I stick my head into her room for the third time that morning, to find her in yet a different outfit.
This one is a dress, white with red cherries printed across it.
“You’re going to be 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 a bruise 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, I kept waiting for someone to tell me this was all a mistake.
When Kate complained that her feet hurt, I rushed her to Dr. Chance, certain this was the bony pain of recurrence, only to find out that she’d outgrown her sneakers.
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 of a 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 down wearing 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 kid hired to make swords and bears and crowns out of balloons.
Kate opens her presents—necklaces made of glittery beads, craft kits, Barbie paraphernalia.
She saves the biggest box for last—the one Brian and I have gotten 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 to this. 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 in circles, happy to be going nowhere.
· · ·
It takes only thirty seconds to realize that you will be canceling all your plans, erasing whatever you had been cocky enough to schedule on your calendar. It takes sixty seconds to understand that even if you’d been fooled 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 back with some abnormal promyelocytes floating around. Then a polymerase chain reaction test—one that allows the 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 a year. But inevitably, it will happen.
They say that word, relapse, like they might say birthday or tax deadline, something that happens so routinely it 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’t broken, or do you wait until the cart collapses?
He recommends that we put Kate on ALL-TRANS Retinoic Acid.
It comes in a pill half the size of my thumb, and was basically stolen from ancient Chinese medics who’d been using it for years.
Unlike chemotherapies, which go in and kill everything in their path, ATRA heads right for chromosome 17.
Since the translocation of chromosomes 15 and 17 is in part what keeps promyelocyte maturation from happening correctly, ATRA helps uncoil the genes that have bound themselves together .
. . 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. I can’t seem to make myself get up and do any of the things I am supposed to, because what is the point of packing 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 not know if I can drag myself to the orthodontist’s, where the receptionist will smile at Kate and tell me, like she always does, how beautiful my children are.
And there is something about the thought of going to Sports Authority 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 or your plan to go buy a pair of cleats.
But those don’t rate quite as high in the grand scheme of things right now.
I’d think that since you’re ten, you might be able to grow up enough to realize that the whole world doesn’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’t revolve 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 look into their eyes and see a reflection of yourself that you wish you hadn’t. Jesse runs upstairs to slam the door to his bedroom.
I close my eyes, take a few deep breaths. And it strikes me: not everyone dies of old age. People get run over by cars. People crash in airplanes. People choke on peanuts. There are no guarantees about anything, least of all one’s future.
With a sigh I walk upstairs, knock on my son’s door. He has just recently discovered music; it throbs through the 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, a vampire’s lipstick; bits of wire stick out like a seamstress’s pins.
I notice the fork he is holding, and realize this 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 live for 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,” he says, “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 fit like an old baseball glove.
Even the photographs on the oncologist’s desk have not changed—his wife is wearing the same broad-brimmed hat on a rocky Newport jetty; his son is frozen at age six, holding a speckled 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 more promyelocytes in her blood.
“We can keep pulsing her with ATRA,” Dr. Chance says, “but I think that its failure already tells us she’s maxed 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 clinical relapse.
” Dr. Chance looks at us. “There’s something else we can try first. It’s called a donor lymphocyte infusion—a DLI.
Sometimes a transfusion of white blood cells from a matched donor can help the original clone 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-fledged relapse—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?”
· · ·