Laughter and tragedy are uneasy companions in a children’s cancer ward.
This week it’s not Tiny Tim or Vikki Carr or Pinky Hull, the ragtime piano player. This week it’s supposed to be the Houston Rockets, at least some of the Houston Rockets, but even with that qualification things aren’t looking too hopeful: two basketballs intended for demonstration purposes are lying about conspicuously idle, and it seems possible that this appointment might just have slipped the Rockets’ mind. To take up some slack Katie Dixie abruptly hands me a basketball and asks me to show the children the art of dribbling.
Uh, this is how it’s done, kids. I display the technique which failed me when the time came for the first cut on my high school B-team, a technique which doesn’t seem too impressive now either—judging from the bland, almost autistic attention paid by the children to the ball bouncing clumsily off my fingertips. I wonder how many of them could be expected to be able to dribble a basketball. Not many. Maybe five or six of the fifteen or so kids assembled here look as though they’re feeling well enough to try.
Who knows what kind of a fatalistic gloss cancer can impose on a child’s mind? Are they brooding? Are they in pain? Or is it just the quiet tension that infects any group of children waiting for a party that puts this morose look into their eyes? After I end my demonstration a girl of about six semi-accidentally rolls the other basketball across the floor to the sole of my shoe—I return it with my foot. She rolls it back, trying to look distracted as nightclub entertainer Paul Clark comes in with his guitar and greets Katie Dixie with mock declarations of love to which she responds in her three-octave speaking voice. Then for a long time the girl and I roll the basketball monotonously back and forth without communicating in any other way. She has dark hair and a body as frail as a bird’s, and she resists, quietly, any alteration in the pattern of our game.
This is Six West, the west wing of the sixth floor of the M.D. Anderson Hospital and Tumor Institute, one of the only three comprehensive cancer centers in the country and one of the prominent fixtures in that vast Disney-land-gone-sour known as the Texas Medical Center, where new hospitals seem to reproduce themselves as rapidly and unobtrusively as cells dividing. (Even now Anderson is cloning an extension of its present butterfly-shape off into a parking lot.)
And in this ward the children, the inpatients who are waiting for this party to begin, are all afflicted with cancer—a slight majority of them have leukemia, the rest have the disease in other, less prevalent forms. Some of them are dying of it, a few are being cured of it, and the rest hover with their parents in its shadow, not really knowing.
This is the high point of the week for the children on Six West and for their mothers who, through a hospital policy, live with their children on the floor during their stay (the median inpatient stay is about two weeks, but some are here for months). Every Wednesday at two in the afternoon Katie Dixie has somebody lined up—she calls up the agents of people who are in Houston in various stages of their fame and usually persuades them to come by and entertain. She’s maybe 60 or so, it’s hard to tell, since she’s one of those people whose enthusiasm eclipses every other feature. It’s she who is going to get these kids laughing today; she seems to know that that look they have in their eyes is not indifference, but merely a kind of reserve.
Katie Dixie is an Anderson volunteer, one of seven on the pediatric floor, and the coordinator of these “Pedi-Par-ties,” which are now famous enough throughout the hospital to cause people to drift up from the other floors to check them out. After all, they could be having the Miami Dolphins again, who showed up last week. (There’s a picture circulating on the floor now from the Washington Post, which got it from the wire services, of Larry Csonka signing an autograph for a boy on the floor, with the boy’s one leg carefully concealed below the frame.) Or it could be Jimmy Durante, or Charlie Pride, or Carlos Mansanto, or the Oilers or the Astros or Pistle the Precious Parakeet. And those are just the most visible celebrities. She’s brought in operas and string quartets and bell-ringing choirs and local entertainers like Paul Clark on a regular basis, with a lot of them asking to come back. At the moment she’s booked two months ahead with people who have called her wanting to volunteer their talents.
The parties are held in the ward’s kindergartenish day room (and indeed there keeps intruding a hazy resemblance between Katie Dixie and Miss Connie or whatever her name was on Ding Dong School). There is a huge Teddy bear and a popcorn popper and little geometrical plastic chairs that, for adults, are like sitting on suction cups. There is also a fairly decent stereo with a record collection that seems at least half-donated (who would buy a record by Sam the Sham and the Pharoahs for a children’s cancer ward?). Maybe it’s owing to the decor that not too many of the older children seem to have come down for the party—the pediatrics floor, which holds about 50 patients, accepts people up to fifteen years old, but most of the kids here seem less than ten.
The children who are here have their mothers with them, and a few have their fathers. Occasionally a father will stay with his child on the floor, but the great majority of resident parents are mothers. One boy, Mike (I’m changing the names of the kids, not because I think anybody would mind if I used them, but because I feel freer in talking about them that way), who’s about nine and whose only hint of infirmity is a shunt on his left wrist, has an outgoing personality that matches the surface appearance of his health—the cut-up at the Cub Scout meeting.
“What are you doing?” he asks me with what passes for irony in pre-adolescents.
“Oh, not much.”
But then what else is there to say? I’m here for the “human interest,” feeding off it, feeling obligated to ask Mike cleverly-disguised questions about pain and innocence and death but not for one minute believing I’m actually going to do it. (“Jesus!” my friends say, “that must be a hard article to write!” And, yes, it’s turning out that way, not because the sight of children and suffering is unbearable, as I’d originally assumed it would be, but because an honest reaction to it seems, for now, so out of reach. Sentimentality, cynicism, rage, humor, philosophy—all of them are such cheap shots and yet all of them seem essential.)
Paul Clark is tuning his guitar while the volunteers pass out little presents to the kids—soap bubbles, dolls, paperback copies of Jonathan Livingston Seagull. Most of them receive their gifts joylessly, as tribute. The Rockets have still not arrived, and it’s beginning to look like they might not show at all. A girl is wheeled in on a cart; someone says her name is Marcy. There’s no telling how old she is—she’s as small as a baby and doesn’t move, only lies on the cart attached to a plasma bottle. Her mother’s hand never strays from the side of the cart.
“Let’s see,” says Katie Dixie, starting the party, Rockets or no Rockets, “who’s new today?”
A boy named Bill is new today, and when his name is spoken he grins for the first time. His hair is vividly red and his face is so pale it seems that his hair cannibalizes the color in his skin.
“Your commercial is beautiful—you sound just like Nat King Cole,” a woman tells Paul Clark, who has finished tuning and is now ready to begin his act, stretching his arms to free his hands and wrists from the cuffs of his sport-coat.
I’m about to take a seat in one of the plastic chairs when I notice someone has left a cup of punch there.
“That’s all right, you can sit there,” says Eddie, a boy whose face has been so narrowed and misaligned by disease that below his nose it is almost no face at all. He’s been silent all the time I’ve been around him, morbidly silent, so that now his small gesture to make me feel at home seems an act of immense graciousness.
Paul Clark, by this time, is into the first few bars of “Gentle On My Mind.” A girl named Adriana watches him from under her knit cap, her face swollen and impassive as an owl’s. You can’t tell what song she’s hearing.
“The very young have remarkably strange concepts,” says Dr. Jan van Eys, the head of the Anderson pediatrics department, using metronomic swiveling of his chair to emphasize points about a child’s perception of reality. “What makes the biggest impression on you as a child is usually way out of proportion.”
Van Eys is a tall man with soap-opera-gray hair and what must be a Dutch accent embroidering the edges of his speech. He’s talking about how children in the hospital deal with their own pain and, frequently, with their own deaths.
“I think that we have here an adult concept of leukemia,” he says, “the younger a child, the less his ability to look into the future. We over-interpret what the child thinks about it. The parents’ attitude is far more important than the child’s.Cancer has changed in children. Fifty years ago it was an acute, lethal disease. With chemotherapy we have a success story—we have changed cancer even for children who have leukemia.”
Chemotherapy is the use of very toxic natural and synthetic drugs—cell-killing drugs—in combination with one another. Van Eys admits to having “grave misgivings” about using these drugs—the side effects are often powerful and often unknown. But the idea is to find the right combination so that the harmful effects of the drugs will cancel themselves out as much as possible without losing their power to kill cancer cells. Treatment for each patient is highly individualized, and experimental drugs are never administered unless the parents request them.
With chemotherapy, van Eys can claim a 95 percent remission rate for leukemia. That’s not a cure: remission is a suspension of symptoms that can last months or years, during which time the child is almost normal and has to come in only for periodic treatment. (Anderson handles hundreds of outpatients every day.) In only rare cases does a remission modulate into what are only cautiously referred to as “cures,” continuous, complete, and unmaintained remission. Some other forms of cancer have more encouraging prognoses: Wilm’s tumor, for example, a cancer of the kidneys, is now 60 to 70 per cent curable.
Chemotherapy is the preferred method of treatment at Anderson. The alternatives, radiotherapy and surgery, are a little cruder. There’s evidence that radiation treatments can stunt growth, and surgery is a little too cruel a euphemism for what often is simple amputation.
“Mutilative surgery has to be taken into far greater consideration,” says van Eys. “We reserve it for those cases for which we hold out a reasonable possibility of cure. Of course, there’s a psychological element—a cure that is purely physiological is not a cure.
“The point is we can help almost every child with cancer. We can change the disease from acute to chronic, from horrible to bearable. The longer he’s alive the better his chances.”
With my—cupped hand
Round the—tin can
That’s Paul Clark doing John Wayne doing “Gentle On My Mind.” So it turns out he’s an impressionist as well as a singer, and he’s not too bad at it either. He runs through the same song as it might be done by Dean Martin, Walter Brennan, and Paul Lynde. The kids don’t get the impressions—but the whole thing is just weird enough to get them laughing, especially when they look up and see their mothers nearly howling, like they were trying to wring the most possible release out of every near-funny moment.
But the kids are seriously lost when Clark goes into a Nelson Eddy/Jeanette MacDonald number, an allusion that has a hard time taking root even among the parents, most of whom seem too young to appreciate it fully. Bill is beginning to look disgruntled again until Clark assumes his falsetto voice for the Jeanette MacDonald half of the duet, twisting his right maroon pants-leg suggestively and acting like a drag queen. That pulls back the attention.
Cheryl, a slight, Alice-in-Wonder-landish girl for whom today is the first day on the ward, is sitting between her parents, who look a little too heart-breakingly like the young couple in bank commercials who have their whole lives ahead of them. She keeps looking up at them and cueing herself nervously on their laughter. Chemotherapy has different side effects for different people: about half of the children here have lost their hair, leaving only a sort of down remaining on their heads; others are very pale, others thin, others slightly bloated in the face. Nearly all of them are equipped with shunts, devices inserted in their wrists to provide permanent access to their veins. The shunts are covered with something like white plaster and resemble the shiver guards that linebackers wear. But Cheryl has not yet been affected in any of those ways. She looks like the average leukemia-stricken little girl on Marcus Welby, MD, and she seems all the more vulnerable for it.
Clark breaks into “Zippadeedooda” about the time a nurse comes in and whispers to a tall, thin, hairless girl in white whose delicately elongated features make her look like a Preraphaelite angel.
“Want to come get your chemotherapy, honey? It won’t take long.”
She slips away quietly with the nurse, missing Clark’s greatest child-pleaser, the Invisible Object in the Dixie Cup. Here is something a kid can latch onto: Clark holds a Dixie Cup in his hand in such a way that his index finger is available to thump it from underneath, creating a sound for the invisible object when it is caught there. He does it straight a couple of times, throwing it up and catching it with only modest body English. Then he throws it again, watching it languidly defy gravity and physics until it makes its re-entry, to thunderous laughter. Clark gives the object to Eddie, who accepts it grudgingly and throws it back straight toward Clark, only by Clark’s interpretation the thing is sailing over his head: he makes a dive for it and barely recovers it before it hits the ground. Eddie smiles for the first time—a shy grin from that atrophied mouth is a triumph for any number of people, as well as for him.
Clark then leads a sing-along in which very few of the children fail to take part. Marcy’s mother leans down to the cart to make sure Marcy knows about it—it’s her favorite song.
Oh tie a yellow ribbon Round that old oak tree,
It’s been three long years,
Do you still want me . . .
And the mothers are singing too, even those who don’t speak English are humming or mouthing the lyrics, sharing the song, I suspect, as much with one another as with their children.
Margaret Buchorn is a social worker assigned to the pediatrics department at Anderson, a woman with broad expressive features set free to graze under what is no more than a functional haircut.
“The fact that parents can stay here,” she is saying, “is of primary importance. A child’s, greatest fear is being left alone —separation anxiety.”
At Six West the parent sleeps on a cot beside the child’s bed, sharing a room and one bathroom with usually three other children and three mothers. But the overcrowding only occasionally erupts into bitterness: the mothers seem too preoccupied with concern for their children to pay much attention to their own situation, and that incredibly sharp focus is probably what gives them a fierce sort of solidarity with one another.
A few weeks later I sit in on one of Buchorn’s Tuesday afternoon sessions for parents. There are about seven or eight mothers and two fathers, none of the same people I saw at the Pedi-Party two weeks ago. Everyone is gathered together in the same day room. One of the mothers constantly gets up to see whether it’s her child that she hears crying.
There are a few people to be introduced: two babysitting volunteers, me, and a student nurse from Lebanon working on her master’s degree. She’s here to ask if there are any objections to her doing a study on their children, to gauge the reactions they have toward illness, fatal illness. She wants to find out the difference between children who have been told they’re dying and those who have not.
To do this, she explains, she plans to show each kid four pictures and ask him or her to make up a story about them. The pictures are simple coloring-book drawings of scenes like a doctor whispering to a boy’s parents outside his door, of a girl walking with a nurse toward a room that says “Intensive Care Unit” on the door.
And the parents look interested, a little stony-faced, but receptive in a strange way.
A woman who seems at least 50, wearing Levis, with a very strong, very weathered face, is the first to speak, asking if the parents get to find out what their children say about the pictures.
“Oh, yes, of course,” says the graduate student, a little encouraged that her broaching the subject of death has not turned them against her.
“Well, I’d love to have her work with my son,” the woman replies.
“Our child is blind,” one of the fathers says. “Is your program adaptable? We’d like to have her participate, even though she doesn’t like strangers at the moment.”
She says that she’ll have to give it some thought but, yes, it can probably be done. Then she leaves, as agreed, to give the parents a chance to make a decision without her presence.
“I think it’s a pretty good idea,” says Buchorn. “Sure it’s going to bother the parents more than the kids—the whole ordeal bothers the parents instead of the kids.”
The proposal is implicitly accepted and there is a silence. One woman is just back with her child after having been home for three months.
“Is it okay?” Margaret Buchorn asks her.
“Is what okay?”
“Your little girl?”
“Oh. No, not really.”
Another silence. Someone brings up the fact that some of the other wards, the adult wards, are going to be having parties and have invited the parents from Six West. No one shows much enthusiasm.
“Well, what do you do at these parties?” the woman in Levis asks.
“What you always do at adult parties,” says Buchorn, “you play Bingo.”
The parents agree that they get more out of the Pedi-Parties—a chance to be with their kids and to see them enjoying themselves; a party without their children just doesn’t appeal to them. They seem helpless, tethered to the condition and moods of their kids for whatever form of peace they can find—yet they seem aware of that helplessness. It’s an adult group of people, quiet, very accepting in a way that is not morbid.
(“We have a lot of parents who become distraught and irrational,” Buchorn, who has lost a child herself, told me earlier, “but most human beings do what they have to do. If they have any substance they manage to get through it.”)
The two volunteers are then encouraged to talk about why they’re here. Pat is here because she enjoys kids and her mother suggested that she do volunteer work—to babysit for the parents, if their children aren’t too sick, so they can occasionally get away from the hospital for a couple of hours. She’s a sixth grade language arts teacher.
Mike was reading the paper one day and saw that there was a need at Anderson for volunteers. “I’m not a teacher like Pat. I’m a businessman for IBM. I asked myself what am I doing to make a contribution with my existence? Not much.”
They are both tacitly accepted, welcomed into the family, but not without some critical looks on the part of the parents, who seem concerned with looking for undercurrents of sentimentality and egotism in volunteers: they’re not going to trust their kids to just anybody. But, once accepted, Mike and Pat are welcomed as warmly as that awesome collective of reserve will allow.
A woman says she feels sorry for the Spanish-speaking mothers (who consist of, at the moment, about half the mothers on the floor) because they can’t really participate in meetings like this. Someone suggests that the volunteers could teach them English, but three or four of the women agree that they would rather learn Spanish instead.
Then there is some complaining about maintenance problems, the overcrowded conditions of the bathrooms, toilets that overflow.
“Well,” says Margaret Buchorn, “the only thing y’all can do is just keep cusssin’ each other and bear with it.”
Katie Dixie is now back in the room with the news that the Houston Rockets have made their appearance; or, one Houston Rocket, at least. Ed Ratliff, a guard, walks into the room looking not at all accustomed to this sort of thing. His eyes, which are a good foot higher than anyone else’s in the room, dart about apprehensively, and his hands fidget nervously with a stack of soon-to-be-autographed pennants.
“You’re a tall one, aren’t you?” says Katie Dixie, and introduces him to Paul Clark who, seeing that the top of his own head comes to about Ratliff’s sternum, exaggerates his own lack of out-sized height by bending his knees and looking up at Ratliff with an awed look on his face. Ratliff responds good-naturedly. Heh-heh.
“Won’t you have some punch, Mr. Ratliff?” Katie Dixie asks, determined to make him feel at home.
“Uh, no, ma’am. I can’t stay long. I’ve got to, uh, go somewhere.”
He eagerly steps out of the limelight and encourages Paul Clark to finish up his act, which his arrival has interrupted.
Marcy’s mother comes up to tell Clark that her daughter wants to hear “Yellow Ribbon” again. He goes over to her cart and leans down close over her ear, above that body that is almost ethereal, and sings once more through her favorite song, making it into a talisman for her.
Now the whole darn bus is cheering,
And I can’t believe I see
One hundred yellow ribbons
Round that old oak tree . . .
For a finale Clark sings a rather too-stirring version of “You’ll Never Walk Alone,” fairly shouting at the final “with faaaaaaaith in your heaaaaaaaart” and finishing with an apocalyptic crescendo from his guitar.
Which is, because there is no way to follow it, the official end of the party. Some of the kids, Mike and Bill among them, go up to Ed Ratliff to get an autographed Houston Rockets pennant. He’s very shy about giving them out, kind, maybe not really aware how much someone like him means to them. Cheryl’s parents talk her into having her picture taken with him.
Then someone hands him one of the neglected basketballs and he spins it, balancing it on the end of his index finger, grinning, in his element at last. Gwaaaaah! They’ve never seen such magic. He hands the ball to Eddie, who accepts it cynically, knowing it won’t work for him, but he tries it and for a microsecond before the ball brushes off the tip of his finger it hovers there, balanced, rotating like a planet. Ed Ratliff tells him to try it once more, this time with a little more spin.