Another nurse follows Bobbie in; together they read the numbers on the bag aloud to each other, back and forth, several times to affirm that it is the right bag, for the right recipient. The wrong bag, with incompatible cells, is a lethal mistake. But this is the same bag Brian helped the doctors fill in the moments after Gabriel was born, the same one that waited for us so patiently.
Gabriel’s gift. A glorified Ziploc stuffed with stem cells from the day of his birth.
Now Gabriel is two; he has opinions and verbs and aversions. He has an incredibly complicated cocktail of feelings about his sister: love and anxiety and jealousy and admiration. But the bag is more or less invisible to him. He looks up at it, in Bobbie’s hand, without seeing it. It is another piece of hospital paraphernalia, another thing of mystery.
Bobbie says it will take Gabe’s cells about four hours to flow into Gracie’s bloodstream. She plans to “run it slow” so that the blood won’t give Gracie a chill.
While Bobbie hooks up the bag, Gracie gallops a turquoise My Little Pony up the length of Tough Guy to one of the pumps, where the pony lies down. Bobbie primes some tubing with Gabe’s blood and threads it through the pump with the pony on top, to regulate the speed. Then Bobbie attaches the other end of the tubing to Gracie’s central line catheter, which leads directly to her heart. Girl and bag are now attached. Bobbie programs the pump with a series of fast, syncopated bleats.
“Bobbie, your machine’s too loud for my pony,” Gracie says. “She likes to sleep in dust puddles.” The pony lies motionless, a tiny plastic horse corpse.
“Bobbie’s doing her work, sweetie,” I say.
Brian touches Gracie’s arm and says, “Do you want to watch Spirit?” I stroke her hair; he strokes her arm.
Gracie says yes to Spirit, and we put it on. Bobbie releases the clamp on the central line, and the stem cells begin to exit the bag and enter the girl. This is the big tah dah. Gracie is oblivious to the momentousness of the moment. Her eyes are glued to the opening credit sequence, in which a Mustang herd gallops across a western landscape, leaping gorge after gorge. “They chase!” she shouts, as she shouts each time. “They chase!”
Brian and I are on opposite sides of her bed, both of us watching the pump and the bag. We do not look at each other. Brian pats her. “They do, sweetheart,” he says, “they do chase.”
I say nothing. I want us to exchange a look, an affirmation. But I am afraid that if I look at Brian, I won’t see confidence. We watch the numbers on the pump tick forward as the blood streams through the tubing and travels toward her.
For lunch, Gracie wants rainbow sherbet. Brian volunteers to run out to a place nearby. Good, let him be the sherbet hero. I want to be alone with Gracie. I want to put good juju around her, though I’ve no idea how.
When Brian leaves I say, “Gracie? Sweetie?” She doesn’t look away from the screen. “Can you hear me, love?” She nods slightly. “Good things are happening, lovey. You are getting Gabey’s blood, and it’s going to cure you.” I am lying beside her in the bed. She rests her head against my shoulder. Brian doesn’t like it when I superimpose my adult anxieties on her child’s reality. Let her watch her video, he’d say. Let her have this experience as a three-year-old. But I want her to hold on to this idea: she will be cured.
Brian arrives with sherbet, and with graham crackers for Gabe. My mom returns with pulled pork sandwiches for everyone, including Bobbie, who drifts in and out, monitoring Gracie’s vital signs. We eat lunch while Gabe’s blood drips into Gracie’s veins slowly. The nursing notes for change of shift read “no distress signals.”
After lunch, Gracie falls asleep in her typical pose—head tossed back, as if listening hard for the answer to a question. Her chin pointed toward the ceiling, her neck arched into a sharp C-curve, body limp, eyelids twitching in time with her dreams.
When she wakes, she wants to watch another movie. Brian goes to the family room for a selection of videos; he presses DVDs, one by one, against the glass, from outside her room, so she can give each movie a thumbs-up or thumbs-down. This becomes a new game. He could just as easily walk into the room and ask, but the silent ritual thrills her.
When the bag is nearly empty, Brian notices that the room has begun to smell strange. “Is that from the sandwiches?” he asks, wrinkling his vegetarian nose. I sniff around, trying to find the source, and keep coming back to the girl herself. I lift her arm, sniff. Smell the back of her neck, under her chin. It’s her. A sickly sweet scent, like candy left too long in a hot car.
Waking up to find me sniffing at her, Gracie asks, “Am I the smelly part?”
I walk down to the nurses’ station. How to phrase this? “Um, why does my daughter smell like decomposing candy corn?”
The nurse is cheerful. “Oh, you mean the creamed corn smell?”
“Do I mean the creamed corn smell?”
“All the kids smell like that when they get their new cells. It’s the preservative the cells are packed in, DMSO; it’s used in canned vegetables.”
“OK,” I say. “Thanks?”
When every drop of fluid is drained, Bobbie unhooks the empty bag and tosses it into the bio waste receptacle out in the hall. Gracie is now sleeping facedown, with two pillows under her stomach so that she forms a little hillock in the bed. My mom gets ready to take Gabe home and put him to sleep.
At the door I lean down to hold Gabe. “I love you,” I say, and kiss his head.
He looks at me, panicky; he’s come to associate “I love you” with me leaving or with being taken away. For him, every kiss is a good-bye kiss.
“No leaving,” he cries, “no leaving.”
“Gabey, love,” I say, “I’ll see you tomorrow.” But Gabe has no solid concept of time. Tomorrow might as well be the year 2050. All he knows is that he’s once again being whisked offstage before the play’s climactic end.
My mom picks him up. “Gabe, I have a plan,” she says.
“What, Didi?” Gabe looks at her, sensing there’s a treat in store, maybe ice cream. Maybe cows, which he newly loves.
As they walk past the nurses’ station, Gabe waves to each nurse, mayoring it up. Two of them stand up to see if he’s got the bee boots on. He does. They blow him kisses that he catches. In a sealed ward of half-broken bodies, his exuberance, his shiny health, his unpained giggle is a form of nutrition we all devour.
The transplant is complete.
Brian and I stay up watching stupid television. We are too washed out for talk, for food, for anything. We’ve done nothing but sit all day; we are exhausted by our inertia, our inability to affect how things turn out. Exhausted by the strain of projecting calm optimism. Exhausted by avoiding each other. If we look closely at the other, we’ll see our own fear. I should go sit with him in the sleeper chair, but I stay where I am.
I can’t manage even the mildest intimacy, and Brian seems to feel the same. I lift Gracie’s hair off her forehead, blow to cool her down, and close my eyes. They chase! No other girl would say precisely this. I hope this means our world can’t do without her.
Her body relaxes against mine. Her breathing grows deep and regular.
Once the stem cells enter the bloodstream, they are self-aware. They know they are stem cells. They survey the body, perceive where they are most needed, and collectively, as a flock of birds bends and turns, they go there. I find the intelligence embedded into cellular biology, at the microscopic level, so touching. En masse they bore out of the vein wall, burrow through muscle, through fascia and bone, to reach their destination. They do this of their own accord. Without any medical inducement or coercion.
They do this just to be nice.
DAY 1
This is the first day; time begins now. As if she were brand-new. In a way, she is.
There is no going back. She’s had the drugs that will change the rate at which her cells replicate, turn her bald, and sick, ripple her nail beds, compromise her liver function, and cause the lining of her entire dige
stive track—mouth to bum—to slough off. Drugs that will seep into the quietest pockets of her body. Every part of her is littered with toxins; there is no way to create a no-fly zone. Even the recess where her eggs are stored—her future, her potential little people—is awash in the chemo tide. No way to protect them. It took nine months to grow her and only a few minutes to meddle with her future.
At the same time, we’ve obliterated what was malfunctioning. Her defective marrow is razed. She is between bone marrows. And now she must grow new marrow. We have no guarantee that this will happen.
In every other kind of transplant, you take out an organ and put in a new one. You aren’t biting your nails waiting for a new heart to grow back, or a new set of lungs to show up. But that’s just what you do with bone marrow: you wipe out the old and pray that the new appears. Because without bone marrow, which produces red cells, platelets, and white cells, you are nowheresville. For a while, medicine can pinch-hit. But only for a short time. Ultimately, engraftment is everything.
When we signed up for this, it was explained with charts and graphs, in blocks of time, with numbered days. The doctors had said, “We will ablate her marrow, transplant the donor cells, and then she’ll engraft.” And we’d nodded our heads, as if affirming an itinerary in which every connection would be made, on time and without drama. Taxi to train to boat to plane to car to home. I never considered that we might stall out, alone in a strange city, where the trains refuse to run.
There are a million tiny trap doors: she can fail to engraft; the liver can falter or sputter to a stop; a virus or germ can invade her. I am vigilant, hyperalert. If I relax for a minute, a sliver of a second, the black dog might trot down the hall, rest against our door.
DAY 2
She’s still eating, which everyone told us not to expect. She’s hungry, even though the drugs act like Drano poured through the digestive tract, causing everything from mouth sores to stomach ulcers to sores on the bum. But she still wants Doritos.
DAY 3
She’s hurting. It came on last night.
She kept waking up, clutching her knees against her stomach, as if she was trying to squeeze the pain out of herself. Or squeeze herself out of the pain.
DAY 4
More abdominal pain, now accompanied by high fevers. She’s sweaty and lethargic, twisting around on the bed, making whimpering sounds. If we sit beside her, she pushes our hands away, “Get off.” If we get up, she’s anxious, “Where are you going?”
When we ask her, “Are you hurting?” she shakes her head. This “no” is a blanket rejection, it’s as if she’s saying no to existing.
I ask, “Do you want a cool washcloth?”
No.
“Shall I tell you a story?”
No.
“Should I stop talking and be quiet?”
No.
“Shall I keep talking?”
No.
“Do you want me to rub your back?”
No.
“Are you sure?”
No.
“Do you want the TV on?”
No.
“Do you want the TV off?”
No.
“Should I get down from the bed?”
No.
“Shall I stay next to you here?”
No.
“Are you hurting?”
No.
“Are you sure?”
No.
Her world is contracting to its component parts: the blanket’s plush edge, a mouthful of water, Brian’s voice at a whisper telling the anty story, again. Small mercies. Stimulation of any kind, even light, seems to pain her.
Still, I hesitate to start the morphine pump that has been standing beside Gracie’s bed for the last many days. When Bobbie arrives late in the night, Gracie is curled up in a ball, not sleeping, but not moving. Bobbie says, “Come chat with me in the hall.”
“She’s hurting,” Bobbie says.
I tell her about the boy we played dominoes with in the common room, whose hands shook. His small face shook. His entire torso shook and shook. His mother had whispered, “Too much morphine—nerve damage—don’t do it.” Another mother told me her child required surgery for the complications caused by constipation from the morphine.
“She’s hurting,” Bobbie says again.
I am afraid that morphine is a gateway drug to the place where children turn into old people, where they bend and shake and rail against their will. After morphine, I’m afraid they can be patched together but never made whole.
“She says she’s not in pain,” I tell Bobbie.
I am also afraid to acknowledge that Gracie is in pain so severe only opiates can extinguish it.
Bobbie looks at me, half empathy, half horror. “Look at her,” she says. Gracie is limp and unsmiling. An inert mound of girl.
Bobbie knows what suffering looks like; she’s witnessed people suffer on at least three continents. She will not collude in denial. She is waiting for my answer; she doesn’t look away from my face.
I hesitate. The domino boy shook and shook.
Bobbie says, “Listen, just try it. If she responds well, then you’ll know you did the right thing.”
Maybe I’ll call Brian to ask his opinion but probably not. He is already angry with me for not starting morphine sooner. He thinks I’m imposing my California drug-averse paranoia on a child in pain. But he didn’t hear the mother say, Nerve damage—don’t do it.
“OK,” I tell Bobbie. “But just a single bolus dose, not the continuous drip.”
“You got it,” Bobbie says.
Finally, Gracie sleeps. A true, sound sleep. She does not whimper or roll from side to side. She makes no sound or motion for five full hours. When she wakes up she is not only refreshed but vaguely excited. She demands the bed controls, she motors the head and foot up and down until she finds a configuration that pleases her: a U-shaped bed. She scrambles to the top of one side and slides down into the valley in the middle. Sliding down, she says with pride, “Look what I made.”
Bobbie has left for the night. I can’t call her at home to say, “Thank you.” But I ask the new nurse to start the continuous drip. It has a bright red self-administration button that Gracie can push any time she hurts. She won’t have to say she hurts; she won’t have to admit defeat; she can just push the button.
DAY 5
When Bobbie comes in, Gracie beams. “Bobbie!” she says. “I feel like I’m gonna have a bath.” Bobbie looks at me with delight, not an ounce of I-told-you-so.
In the bath Gracie plays with her plastic horses and croaks out their stories in her newly raspy voice: “I’m falling. Catch me. He got up!” I wash her hair, which has begun to fall out. When I run my fingers along her wet head, dozens of strands cling to my palms in dark lacy patterns.
I call Brian into the bathroom; should we talk with her about going bald? He sits down on the toilet. Gracie is happily drowning her ponies, one by one.
Brian says, “Sweetie, can you listen to me? Do you remember how Mommy and I told you your hair would fall out? That’s happening now. In a while your hair will be gone. Then, later, it will grow back, maybe curly.”
“Daddy,” she says. “I don’t want curly hair.” Brian looks at her. A resurrected pony is swimming, by her hand, the length of the bathtub underwater. She lifts it up. “This guy has a flag on him butt!” He’s the patriotic My Little Pony, stars and stripes cover his haunches.
“Wow, he’s lucky,” Brian says. “I wish I had a flag on my butt.” She doesn’t laugh but gives him a charity smile.
I give him a pointed look. Press on. Tell her she is going to lose her hair. All of it. “She’s as prepared as a three-year-old can be,” he says later. “She heard us.”
I nurse a flame of annoyance. His way may be better, but I can’t stop myself from wanting to explain things or from wanting the reassurance of hearing her responses.
She’s only three, Brian says in my head. Three. She’s three. Soon to
be four.
The most important thing is for her to feel we are united in loving her, protecting her. Brian is still sitting on the toilet, chatting with the red, white, and blue patriotic pony.
“And you, sir,” he says to the pony, “what are you going to be when you grow up? You can’t stay a pony with a flag on your butt forever, you know.” Gracie finally laughs.
I want to touch Brian, hand to knee or chin to head. But I don’t. The most I can do is be in the room. The two of us and her. Mostly her.
My field of vision is narrowing; I see Gracie huge, each tooth as large as a farmhouse, each eye as wide as Lake Tahoe. Everyone else is vaporous, grayed out, barely visible.
Later, when Gracie falls asleep, Brian (ever sensitive to unspoken thoughts) says, “We don’t have to disappear each other to get through this, you know. We can do this shoulder to shoulder. Maybe even face to face.”
“Or,” I say, “we can just see each other on the other side.”
DAY 6
Her first words on waking are “Get this hair off me.” It is everywhere. Coating the sheets and pillows, all over her clothes. “It itches,” she says, as if there were no worse fate.
We offer her a buzz cut; she accepts. It’s a classic you-can’t-fire-me-I-quit solution.
After we are done with the clippers, she turns to me and says, “Now I’ll do you.” I am prepared to do it though I hope not to. I like my hair and already had a buzz cut once in the wake of a disastrous dye job. If I’d been thinner, I might have looked tragic or mysterious or hiply countercultural. As it was, I’d just looked like a military reject or a confused spiritual recruit. Buzz cuts do not become anyone, except the young Sinéad O’Connor and the old Georgia O’Keeffe. Otherwise, not to be attempted.
Thankfully, Gracie seizes instead upon two of her favorite ponies, both of whom are happy to make the sacrifice. She hacks off their plasticized manes and tails with a silver nail scissors, humming to herself. “It’s just hair,” she tells them, “you don’t need it.”
Later she perches a single rider on top of a horse’s head and makes the rider jump into the ocean below. In her play, peril is the driving force. Figures are perpetually falling and being saved, drowning and springing back to life.
Happiness--A Memoir Page 22