I pointed to Gracie, “That is my daughter.”
“I know,” Ramya said. “Only the new kids have so much energy.”
“Have you been here long?”
“Day three. But we’ve been here almost two weeks.”
Two weeks but day three, whatever that meant.
I was totally disoriented in time. Clocks had become irrelevant. Time was a wisp of air when the door opened; a brush against the ankles. A whisper, half overheard, out in the hall. Hospitals reminded me of casinos, sealed worlds devoid of time. Fall wouldn’t come sweeping down the hall, nor spring, nor summer, nor winter. The hospital was evenly heated, brightly lit, austerely colored, 365 days a year, 24 hours a day. Without a single sign of outside life. Which seemed odd for a place whose primary purpose was restoring life.
Day became night, became day. It didn’t matter what hour you ate breakfast or brushed your teeth or combed your hair or watched America’s Funniest Home Videos. It barely mattered if you did these things. Time was something we had to slog through to reach the other side.
I didn’t ask Ramya what she meant, day three. I figured we’d find out soon enough.
42
As soon as we meet another family, the first question is, “What Day are you on?” Transplant, we find out, does have a clock. A very particular clock.
Each transplant day is assigned a number. The countdown begins with Day −10 and continues to Day 100, a mythical day. On Day 100 you’re “done.” Every day prior to transplant is expressed negatively. Every day after transplant, positively. Days −10 to −1 are spent ingesting the chemo drugs. This is time before time. Day 0 is Transplant Day, ground zero, when patients reset their clock. Are made new. After transplant, time is expressed once more in positive numbers because each day forward is a gift. A bonus. These are days your child might not have been allotted. Days received as grace.
Days 1 to 10, we are told, are when patients typically begin to feel the effects of the chemo. And Days 10 to 20, when the drugs hit the liver hardest, are the most dangerous period. Especially for Gracie.
By Day 40 the hope is to be discharged from the hospital and to be treated as an outpatient in Duke’s clinic until ready to return home—on Day 100. It’s a blueprint, a plan. There is no guarantee that any patient will follow it precisely or even loosely, but I’m happy to have goals, markers toward which we load our bow.
In a spiral-bound notebook I make a vertical list in my smallest, neatest print beginning with Day −10, traveling past Day 0 (Transplant Day) and ending with Day 100. One hundred and eleven days. Doable. Beside each day I intend to take notes.
Once, before I had kids, let alone a sick kid, I read the Lorrie Moore story “People Like That Are the Only People Here,” in which a husband advises his writer wife to “take notes” on their son’s treatment for cancer. How could you take notes, I’d thought. At a time like that. Now I think, what the hell else can you do?
DAY −10
They give her the first dose of chemo. Brian holds my hand as they load it into the dispenser on Tough Guy. We can’t undo this now. I try not to think about that, how time only blows in one direction.
We have a window, outside of which is one tree. Leafless. In the distance there is ice and snowy goings-on, the occasional slice of blue sky. None of it feels pertinent.
DAY −9
Gracie smiles every time Bobbie comes in, “Bobbie, you wear glasses!” As if Bobbie should be made aware of this astonishing fact. Last night she woke out of a deep sleep, saw Bobbie’s glasses glinting in the darkness, and opened her arms to hug her. I think that is the first spontaneous gesture of affection I’ve seen her extend to a medical person.
DAY −8
Chemo continues.
Busulfan and soon its equally poisonous cousin, ATG. Chemo, as it’s used in transplant medicine, has been described as “carpet bombing” the body. An assault, from the inside out: massive doses, given over a short time, designed to empty the bones of their own marrow. Gracie’s drug regime will last eight days. Several of the drugs come only in oral form.
Oral chemo—a nonintuitive phrase. The dose arrives every four hours. The drug looks like sludge cut with metal flakes, thick and foul. To administer it, we must wear protective rubber gloves. Gracie—who up to this point has done almost everything we’ve asked—is distraught when we request that she eat poison. Today, at the midnight dose, a drop landed on my pants. Bobbie looked at me with alarm and said, “Ya’ll better change!”
Every four hours we place the syringe on her lip. “Swallow, please.”
“I will take it,” Gracie says, “when Daddy gets back with my drink. When Bobbie comes in tomorrow. I will take it when it snows … inside this room.” We stand firm.
“It’s her job to fight us,” Brian says, “and our job to win.”
The alternative to her willingly swallowing the drug is to feed it to her forcibly through a tube pushed through her nose into her stomach. Each time she swallows, I am flooded with relief; she has exercised agency. She chooses to do the awful thing, rather than have it done to her.
DAY −7
I watch a spelling bee documentary as Gracie sleeps. She wakes and watches high school students struggle to spell words like fatigue and ennui for an hour without demanding, as she usually would, to put on a “kids’ show.” When I ask her, “Sweetie, do you want a kids’ show?” she makes no answer.
Later she turns on her side to face me and says, “If I do all this stuff, will it get rid of my itchies?”
“Yes,” I say, “no more itchies.” If she is going to lose her hair, feel sick, and be stuck in a hospital bed, she wants a reason. For her, that reason is the eradication of itchies. She looks at me, sensing a beat of equivocation.
“OK,” she says, “I’ll do it.”
DAY −6
I leave the hospital and return to the apartment complex in the late afternoons. It’s a split-screen existence. Spending time with Gabe is a ripple of joy. If my fear is a plane hurtling toward the earth, Gabriel is a hit of oxygen on the way down.
While Brian stays with Gracie at the hospital I play with Gabe, feed him dinner, play with him some more, change him into pajamas and bee boots, give him a bottle of milk, and pray he will fall asleep on the drive back. If he doesn’t, he has to watch me disappear once more in the big mouth of the revolving glass doors when Brian and I trade places. Mostly he does sleep; he is tired, it is dark, and I sing to him as we drive.
But after a few nights of this routine, it dawns on Gabe that if he doesn’t fall asleep, maybe he won’t wake up to find me gone. All through the drive he struggles to keep himself awake with an unbroken stream of chatter: “Truck. Big trucks. Daddy. Daddy’s tiger. Daddy’s pony. Hospital. Yacie sick.”
I pull into the semicircle of the hospital driveway and call Brian to let him know we’ve arrived. I say, “Gabriel, yes, you have a truck and a daddy, and Gracie is in the hospital.” I stroke his cheek humming, Please fall asleep, love.
But he’s wide awake. When I lean down to kiss him he grabs hold of my hair. “No leaving!” he says.
The week before, I gave him a coin to toss into the lobby fountain and asked, “What do you wish for?” “You,” he said.
I kiss him again. “I have to leave, lovey boy. But I’ll see you tomorrow.”
He still has hold of my hair. “No leaving!”
I don’t know how to respond. “I have to go,” I say. “I have to take care of Gracie.”
He is quiet for a moment, taking this in. And then very deliberately, very slowly, he says, “Take…” Big pause as he works to remember my word, “care,” he continues. Another pause … “Gabey.”
Take care Gabey. A fine, fine idea if ever there was one.
Brian arrives and—in pursuit of a Coke for the drive home—runs into the lobby gift shop with Gabe, hospital celebrity. The guard smiles at him and says, “Baby Gabe! Wearing your boots tonight?” The gift shop woman offers him a fat
Tootsie pop on the house. And two complete strangers stop to admire his cheeks (so round, so dimpled) and his general joie de vivre.
I kiss Gabe one more time before going upstairs, drawing out the good-bye. Never good. Back go his hands into my hair. “You’ll have fun with Daddy!” I say. Brian hates being touted as the consolation prize. He and Gabriel have a fantastic relationship; he doesn’t need a propaganda campaign. But I can’t help trying to deflect Gabe’s sadness. Though it’s a doomed effort; he is, all day, bobbing in the thrashing tide of our collective anxiety.
DAY −5
New Year’s Eve around midday Gracie falls asleep for an hour or so and wakes up in a mysteriously good mood, singing the Barney song, “I love you, you love me, we’re a happy family.”
She goes on eating Doritos and playing with her ponies and asking to walk Tough Guy in the hall, even as the drugs rise to therapeutic levels. We know the side effects of chemo are delayed, but still … Will she skip over the pain entirely? Only her mouth is peeling in huge, dry rinds of skin. This is far beyond chapped lips, more like a snake sloughing skin. Not a condition conducive to taking oral meds.
Bobbie comes on at 8 p.m. She has the overnight shift. Just like her to take overnight on New Year’s. She arrives with bubbly apple juice and three plastic champagne flutes. Around midnight she and I and Gracie toast each other. Gracie seems unclear what makes this a new year. She keeps asking, “How is it a different one?” I can see her point.
Brian calls from the apartment, so we can toast each other. Gabe is asleep on his chest. Gracie’s nodded off on my shoulder. We are a nuclear family of four, divided into two twos. Separated by six miles. I feel eons apart.
“Cheers to you, darling,” he says. “Cheers to everything you are doing for her every day.” “Cheers to you too,” I say, “for getting on and off planes. And teaching when you’re worried sick. And, most of all, for being a tiger, Pony.”
“Cheers to a better year,” Brian says.
We both let that idea drift out there.
Tomorrow Gracie begins ATG. We’ve been told to expect the possibility of high fevers, chills, nausea and vomiting, seizures, burning and bleeding of the bladder, terrible rashes, or more serious allergic reactions. I do not ask for a definition of more serious.
I look up ATG online. “Anti-thymocyte globulin is an infusion of horse- or rabbit-derived antibodies against human T cells, used in the prevention and treatment of acute rejection in organ transplantation.” Dr. K has to choose whether to give Gracie ATG serum derived from horse or rabbit cells. Would Gracie’s love for horses make her body more or less inclined to accept a horse-based drug?
DAY −4
I want to ask Ramya which ATG drug Varun had, rabbit or horse, and if he reacted against it. But I don’t; we’re still getting to know each other. Varun is some weeks ahead of Gracie and recovering well. He benefits from the undivided attention of his mom. She does not leave his side. Ever. She’s there every minute of every day without interruption. I never see her in the parents’ kitchen. I never see her without Varun on her shoulder. As many minutes as Varun’s dad, Deepak, can be there, he is. This is the most loved baby, I think, of all time.
He gurgles, he coos, he smiles; he flings his huge-eyed calmness around the room. He does not cry. He has myriad reasons to cry, every day, but I have no idea what his cry sounds like. Only his laugh, his soft whoop of surprise or curiosity. Or his sigh, as he settles into his mom’s shoulder. Gracie considers herself an honorary aunt. She calls him, as though she were decades older, “Baby Varun.”
DAY −3
It is late afternoon when we find out that a child has died on our unit. I don’t know the family, don’t know the child, but feel stricken. How has this been allowed to happen?
Bobbie is off duty. An unfamiliar nurse comes into our room. “It is OK,” she says, “the family was prepared; they knew it was going to happen.” She wears heavy blue eye shadow and smells of Jean Naté perfume. She looks too young, too naive to realize what she’s just said.
“Do you have children?” I ask.
You can’t prepare to have your heart pulled up your throat, plucked from your mouth, and hurled into space.
When Gracie falls asleep I walk down the hall, to what I believe is the door of the room where, hours before, a child has died. It’s closed. The blinds are drawn. There is no sound from within.
The door is identical to the fifteen other doors on this floor. Thick wood, steel industrial knob. Window, with curtain drawn. I linger there for as long as I can without seeming to be lingering.
I wonder if the parents are still inside. How long will they be permitted to stay? I would not leave. I would refuse to go. This is self-deluding. But it comforts me to believe I would never leave that room.
Why am I standing here? Am I looking the way you look at an accident? The parents, should they open the door, won’t want to see a stranger. But I want to look into their faces, to occupy them, for a sliver of second. To know if such loss is survivable.
Losing a child makes time reverse direction, flow backward. To survive loss on that scale, I imagine, you have to become someone you make up, whole cloth, to impersonate you, for the rest of your life.
On the way back to our room I pause at the nurses’ station. There is a subdued vibe, but everyone continues to work. I want to gather information. Of course, this is impossible; I cannot ask; they cannot answer. But I want to know. Give me a map. Tell me where not to go.
When I get back to the room Gracie is awake and anxious.
“Where did you go?” she asks. I’d been gone ten minutes, maybe fifteen.
“I went for a walk in the hall, lovey. I was right outside.”
“You weren’t here when I woke up.”
I climb back into bed with her even though I want to get on the phone with my mom, Cassie, Suzi, Kathy. I want to tell someone about the door, how it looked like any door. Like our door.
It isn’t a big bed, but it is big enough for the two of us. I keep as much physical contact with her as possible. I want her to know I have the rope.
DAY −2
The child was a boy. Six years old. Sam. He loved horses. A picture of him in his cowboy hat appears in the parents’ lounge. Under the photo is a quote from John Wayne, “Courage is being scared to death and saddling up anyway.” There’s an address to send condolences. In the photo his right hand holds the reins, a slender length of leather connecting him to the mouth of a huge brown horse.
It’s OK. The parents were prepared.
After this, I don’t believe anyone else will die. I tell myself a loss so large won’t be followed by another. This belief is childlike, willed blindness. Children die here. But I believe it.
When Bobbie comes to work I say, “Did you know Sam?” She nods. She wells up. I have the sense that even when she is at home, mothering her own four sons, she is thinking of her patients. Occasionally, she calls the ward on her days off to see how Gracie is doing, how the other kids are.
Many of the nurses on our unit respond to the loss with an understandable steeliness. Bobbie, by contrast, transmutes her grief into a reservoir of caring. Instead of being inured to the suffering of the children, she is wholly present. For them. With them. Into every mundane interaction, she brings to bear all her skill, all her experience, all her heart.
DAY −1
Rabbit was the right choice. No fever, rash, vomiting, chills, burning bladder, or “more serious” allergic reactions. Probably this can’t last. It’s cognitive dissonance—bone-marrow-transplant girl feels terrific or at least no worse for wear. Probably we are in a liminal space, a calmed threshold before the storm. But I prefer to believe transplant is nothing worse than a bored girl eating bag after bag of Cool Ranch Doritos, hoping Nemo finds his father.
Her crankiness and fatigue are probably as much from the bad food and confinement as anything else.
Tomorrow is the actual transplant.
Just before
dawn, she sits up and says, “I don’t want this shirt,” then topples back asleep. Brian says Gabriel woke up around the same time at the apartment and said, “Bad pony!” They are having a conversation, from across town, dreamer to dreamer.
I don’t want this shirt.
Bad pony!
They are connected and will soon be more so.
We haven’t emphasized that her donor is Gabriel, but it seems worth saying, “Gracie, tomorrow you’re going to get Gabe’s blood, and then your body will get well.”
She looks puzzled and annoyed. “You are giving me Gabe’s blood for my blood?”
“Yes, sweetie, but once it is in your body, it will be yours.”
“OK,” she says, as if to say, not my first choice.
Maybe she doesn’t like the idea of getting Gabe’s blood because he’s a boy or her brother, or maybe because it is inherently icky to allow someone else’s blood to circulate through you. We don’t tell that her bones have been emptied, that without an infusion of new cells she’s made of straw, a scarecrow girl.
DAY 0
Transplant Day. All day our people send emails from California and New York, wishing Gracie well, asking for updates. The word transplant has everyone hyperactivated. It sounds like the violent rearrangement of delicate interior spaces. In reality, it is shockingly simple.
Last week Gabriel’s cord blood was FedExed from Oakland to Durham. I’d said to Dr. K, eyebrows up, “FedEx?” Life on dry ice, life with a tracking number. But the bag arrives unscathed. Ready for its big debut.
My mom and Gabriel and Brian are all present. Bobbie is on duty, great luck. Around noon she walks in the room with a plastic bag of scarlet fluid. Life force harvested from one child, conserved, frozen, and flown cross-country to be thawed and poured into a second child. It is odd to imagine the biology of our two children mixing in this way. It seems like a garage science experiment concocted out of boredom on a summer afternoon: OK, we’ve got this Barbie and this Ken. Let’s pull limbs off one and attach them to the other and see what we get!
Happiness--A Memoir Page 21