“He has been looking forward so much to this trip,” she said. “I just hope he’ll get better in time to go. Maybe talking to you will cheer him up. He’s been looking forward to meeting the reporter.”
Anthony’s powder-blue Dukes of Hazzard T-shirt was hiked up over his round brown belly. His blue jeans were unbuttoned at the waist to ease the pressure. The right side of his face was pressed into the pillow, and he did not look at me when he spoke.
“You the reporter?”
“Yes.”
“Go ahead, ask me questions. I’m ready. What do you wanna know?”
With little prodding, Anthony began to talk. He talked in a torrent to take his mind off the pain and the place. He directed his mother to show off the scabs on his back where the doctors had only days before performed painful spinal tap and bone-marrow tests. He told me he wanted to be a paramedic when he grew up.
“Ask me about the leukemia,” Anthony demanded.
“Tell me about it.”
“This same thing happened to me last time when they gave me the drugs, but it was worse,” he said. “It hurt so bad that one night when I stayed at the hospital I screamed all night. They kept coming over to me and asking me if I would just try to calm down, but I couldn’t. It really hurt. Finally, they just gave me a shot of Demerol that took the pain away. But they won’t give me that strong stuff very much. At first it made me mad, but now that I’m older I understand it. Yeah. You see, if you keep taking it, then eventually it has no effect on you. So when you hurt real bad, they can’t help you anymore. That would be rough. Now I don’t expect to get it. I only had it that one time…”
The doctor walked into the room and cut short Anthony’s monologue. He spoke to the boy’s mother, not to him. He explained that the constipation was typical of Anthony’s response to the drugs, that after feeling the boy’s stomach he didn’t think it posed a serious problem.
“This is the reaction we expected with that large dose of meds we gave him last week,” the doctor explained. “We could give him something to ease the pain, but the pain is a good indicator of what’s going on. If we knock that out, then we don’t know what’s happening inside.”
“I wanna go home,” Anthony announced abruptly, starting to sit up, having heard in the doctor’s hard reasoning an echo of his own explanation to me. Bent a bit at the waist, his mother’s arm around his shoulder, Anthony lingered outside the examining room long enough to down a small plastic cup of Tylenol before boarding the elevator to wait out the pain at home.
As the elevator doors closed, Anthony said confidently: “I’m gonna make it.”
The same morning, Donna was visiting the clinic with Billy. He was in a small treatment room sitting on his mother’s lap, worried. His mood was in conflict with the cheerful cartoon animals on the wallpaper.
Billy is an especially beautiful child. He has his mother’s oversized, oval green eyes and prim lips that purse tightly when he’s troubled or angry but which usually grace an unrestrained, tiny-toothed grin. Even without the side effects of his treatments, Billy has the rounded belly of a four-year-old whose body has stretched into boyhood without shedding the budlike luster of infancy.
This was to be the second in a long series of injections, spinal taps, and bone-marrow tests. After leukemia was diagnosed in December of 1980, the first round of treatments put the disease in remission. Billy had resumed a normal existence, except for monthly blood tests and painful bone-marrow tests every third month. Then in May, just two weeks before the Disney World trip, the leukemia had come back. The relapse meant Billy’s chances of surviving were drastically reduced.
The treatment—there’s no way around it—is plain torture for a child. On this morning, Billy was to get two needles, one to draw blood from his left forearm and the other to inject drugs into his left leg. The leg shots hurt.
Billy was already an old hand at this, but fear showed in his face. Under a film of moisture, his eyes followed every move of nurse Dotty Golasa as she prepared the two syringes. Then, as Golasa picked up the first of them, Billy blurted, “Can I go to the bathroom? I have to go to the bathroom.”
Donna and the nurse looked at each other over the boy’s head, rolled their eyes, and smiled in sympathy. “Okay, Billy,” Donna said, lifting the boy off her lap. The two hurried out the door and down the hall.
“I get that a lot,” Golasa said, turning to me with a smile that summed up the sadness of her dilemma, how she must hurt these children to help them.
Donna and Billy were back in a few moments. “He wasn’t kidding,” Donna said. Then she positioned Billy on her lap for Golasa to begin the shots.
“Why don’t we yell ‘Ow!’ when you get the shot; sometimes that makes it feel better,” Donna suggested. “Maybe Mark will yell, too.”
“Right,” I said. “Why don’t we see who can yell ‘Ow!’ the loudest. I bet I can yell louder than you.”
Billy’s eyes widened happily.
“You tell us when to yell, Billy,” Donna said as Golasa leaned forward with the needle. Billy watched with knotted brow as the needle entered his arm.
“OW!” he shouted, and we all joined in, “OW!OW!OW!OW!”
“I yelled the loudest!” Billy said.
“People are going to wonder what’s going on in here,” Golasa said, and she laughed.
Donna had been notified earlier this year, out of the blue, that Billy was an alternate for the Disney World trip. Joan Taksa Rolsky, the clinic’s social worker, asked her whether Billy had ever been there, and Donna said no. In March, she got a letter saying that because several of the children chosen were too sick to go, or had already been to Disney World, she and Billy would definitely be making the trip.
It was the only nice surprise Donna ever got from St. Christopher’s.
That was two months before Billy’s relapse, which put Donna “in a state of shock of some sort.” The ordeal of the first year of treatments had been shoved way back in her mind. “I hadn’t even considered that it would come back, which was dumb, I guess. But it really just wasn’t in my mind at all. He was doing so well; he looked so good.”
Donna said she found herself oddly incapable of emotion. She listened to the doctors, to the bad news, able only to absorb it.
“Before the relapse, they had made it sound like if the leukemia came back, then there was almost no chance Billy would survive,” she recalled. “But then right away the talk shifted to possible treatments, and suddenly there were still chances, even though they were smaller. Billy was sitting in the chair next to me and he was asking me to read him a book, he was pushing it on my lap, so I took the book and tried to read to him, but no words came out. I just couldn’t get myself to speak. When I left the hospital that day I was just numb. I said good-bye and walked out the door. I took Billy to the zoo. I remember thinking that the doctors must have gotten the impression that I didn’t care about Billy at all. But I was just numb.”
Billy’s treatments started two weeks later, and this time she knew what to expect. The drugs would make Billy sick and irritable. His hair would fall out—those soft, silky baby locks. His belly would swell because the drugs would enlarge his pancreas and his appetite. His legs would hurt so much from the injections that he would hardly be able to walk. It would break her heart.
She remembered musing, at some point after learning of Billy’s relapse, “I guess that shoots the trip.” But the doctors, seizing upon something they could guarantee, promised her that Billy could still go to Disney World. Suddenly, though, the joy of it took on a tinsel quality.
Miragelike across a sun-dappled lake, the green shores of The Magic Kingdom rise gently, broken only by patches of perfect trees and sculpted bushes of dancing bears, elephants, camels, and birds. Beyond the tree line, the village rooftops of Fantasyland lean with the grace of innocent imagination toward the familiar blue and silver spires of Cinderella Castle. There it rests like gumdrops on acres of meticulously groomed, blue-green O
rlando swamp…a dream made real.
Anthony Mancini wasn’t along. When the pain was still with him the day before our departure, he decided on his own not to go. But the children here were in ecstasy. On the ferry to The Magic Kingdom, they ran and laughed and hung on the railings. We were on a boat! which was only slightly less fun than that morning’s trip on the airplane! or the TV cameras! at the airport, which were at least one fun notch above the neato electronic games! in the lobby of the TraveLodge Hotel or the bus! that brought us to the ferry.
Inside the front gate, the theme park erupted with color and excitement, people and events, oversized costume animals who sign autographs for throngs of thrilled children, rides and marching bands, submarines that somehow dive in only four feet of water, and rocket ships that sweep believers to Mars without ever leaving the ground. It would be more than a child could take, if not for exhaustless energy reserves of joy.
We parents spent a long, hot day just keeping up. By darkness, when the group gathered for a bus back to the hotel, most of the children were half asleep. Once aboard, they quickly dozed off on the plastic seats, clutching their new dolls and balloons and other Disney souvenirs. Parents swapped stories about the afternoon, then fell to talking about their children and cancer, treatments and side effects, hospital talk, comparing notes and the burdens, complaints, and little triumphs that only they understand.
As they talked quietly, an elderly woman, not one of our party, walked back to hold the rear handrail. A sturdy woman with a red suntan and cropped white hair, she seemed delighted to see so many children and started right in asking questions.
“Where are you all from? Are you here together?”
“We’re all from St. Christopher’s Hospital, here just for three days,” said James Carroll, his son Jimmy asleep on the seat next to him. The word “hospital” registered immediate concern with the woman. She began to take in young Stephanie Schwartz’s frailness and head scarf, the tracheal tube in the neck of Bruce Lee Zayas…and then there was a husky trace of sympathy in her voice.
“What’s wrong with your boy?” she asked Carroll.
“He has cancer.”
The woman groped for what to say next. “Is he going to be all right?”
The question caught Carroll short for only a second. “Yeah, he’s been doing fine,” he said, his answer calculated to ease them both out of a difficult conversation. But this was not a woman to turn back. She spoke to all the parents sitting around her, asking what was wrong with each child, inquiring sympathetically about each one’s prognosis. By the time she turned to Bruce Lee’s mom, a flamboyant young woman sporting purple-tinted glasses and tight-fitting, leopard-print short-shorts and tight top to match, Marianne Zayas had had enough of the whole scene.
“And what’s wrong with your boy?” the old woman inquired.
“EVERYTHING!” Zayas exclaimed, and the crowd broke into laughter.
That night was when Donna and I dined on the small balcony, eleven floors up. Lamps from the TraveLodge parking lot cast a soft light. Donna is a good talker, an open, earnest woman. The slenderness of her face exaggerates the size of her hazel eyes, all lending to her look of innocent intensity. At the clinic, only a week before, this open gaze seemed stricken and weary.
Billy is her only child. It was not long after she separated from her husband and moved from northern New Jersey to Philadelphia that Billy’s cancer was diagnosed. Divorce makes life hard enough to sort out, but add a child’s leukemia, and it seems especially hard to bear.
“He was still a baby then almost,” Donna said. “He spends weekends with Bill, his dad…Billy just worships his father. All through that period when we first broke up, Billy was running low fevers and was irritable. It always seemed as though he’d come back from his father at the end of the weekend like that and I’d get mad at Bill, the poor guy. ‘What are you doing to him to always make him sick?’ I’d complain. Bill would shrug and explain that he had taken him on a picnic or something or to his mother’s. He wasn’t doing anything wrong, of course, just the normal things. I suppose I was really blaming Bill for other things at that point….”
Donna spanked Billy one night for being difficult and ornery, then put him to bed. When he woke up in the morning his bottom was blue—“not black-and-blue,” Donna recalled, “just blue. It was horrible. I was frightened and torn. On one hand, I thought right away I should take him to the doctor—it was weird. But I didn’t want anyone to see him looking like that! I felt like a child abuser. But I’m a rational person,” and here Donna forced a comical, self-deprecating grin, “and I knew I hadn’t abused Billy, that I hadn’t hit him that hard. So I took him to his doctor that day.”
Billy’s pediatrician was concerned when he saw the bruises. The boy’s history of fevers had puzzled him for some months. Now he wanted more tests, blood tests at the hematology clinic at St. Christopher’s. Donna grew worried.
“You know, on the night after I took Billy to the doctor with the bruises, that was the first time I put all the pieces together. You’d think…I mean, I think of Bill and I as being people of above-average intelligence, we both have good educations…you’d think that we might have been able to deduce something after months of seeing Billy’s fevers and bouts of nausea and easy bruising. You’d think we might have been able to reach the conclusion sooner that something might be seriously wrong. But that day was the first day I saw it all together, and I was really shook up about it. I had been talking on the phone to relatives all night, and then, very late, my boyfriend called and we talked about it for a long time. He could tell how upset I was, so to console me, you know, he says, ‘Well, Donna, think what’s the worst thing it could be.’ And do you know what I answered? Right away I said ‘leukemia.’ That was the first thing I thought of, even though it hadn’t occurred to me until then. Of all things…. Of course, for us, it turned out to be the worst thing.”
When they told her at the clinic that Billy had leukemia, Donna “freaked out.” She was there with Bill and her boyfriend, Carl. “I went right over and cried on Carl’s shoulder—I feel guilty about that now…. Whose shoulder did Bill have to cry on? Billy is our son.” When she wasn’t crying, she was shouting at doctors. She was a stranger to cancer, and she recoiled at the sight of these sickly children who wore scarves to hide their baldness, of parents who dragged in and out of the clinic, so worn and weighted down by frustration and fear.
“I will not be like these people,” she shouted that day, over and over again. “I will not be like these people!”
But over the next year and a half, Donna Schanel was ushered into clinic life. She became acutely empathetic to Billy, his illness draining her own vitality. She lost weight and started smoking more cigarettes. But when his condition took a turn for the better, there was such elation. During the year of Billy’s remission, Donna’s own health improved.
She developed a strong interest in holistic medicine and began consulting a chiropractor who specialized in nutrition. When the boy’s leukemia returned, Donna started a nightly routine of confronting—with the combined force of their imaginations—the demons that had beset Billy’s blood and bones.
Already she had given so much—like the teaching career, abandoned the first time Billy got sick. Later she started an exciting job as a sales executive, and that, too, would now have to be abandoned. Donna accepted that. But the relapse seemed to demand that she accept something else:
You cannot make Billy well with love. Donna didn’t want to hear it.
Just a few days before the trip, she and Billy drove into Center City from their Northeast Philly apartment to sit in the television audience of The Jane Whitney Show. A guest on the talk show was Gerald Jampolsky, an advocate of “attitudinal healing,” which stresses the importance of surrounding sick children with the kind of loving, constructive attention they need to bring their own inner resources to bear in combating illness.
After the program, she had breakfast with Jamp
olsky and a representative of the TV station.
“They asked me what I thought of the show,” she said, “and I had to tell them the truth. I told them I was disappointed with it. I explained that I was interested in hearing about Jampolsky’s philosophy of attitudinal healing, but they hadn’t actually talked very much about that. On the show he had talked mostly about dealing with the process of dying. Jampolsky—he’s really a sweetheart of a man—told me that I should abandon curing Billy as my main goal, that I should concentrate instead on living every moment with him more fully, making the most of life from day to day, minute to minute.
“Well, I believe in making the most of every moment with Billy, but his message wasn’t what I wanted to hear. My main goal is to get my boy well.”
The sudden rush of feelings that came over me that night, watching my healthy son sleep alongside Billy, had much to do with the ties that Donna and these other parents had formed with their children. They had much to teach me about caring for my own.
Earlier that day, a mosquito had bitten Aaron just over his left eye, and his eyelid had swollen nearly shut. “If you don’t have Dotty look at that, I’m not going to speak to you,” Donna had said.
And though I had known the insect bite was hardly serious—Aaron hadn’t even complained—I sought out Dotty Golasa, the clinic nurse, and asked her to check it. I was beginning to realize how much I took for granted: not just that Aaron would remain healthy, but that he would know how much I cared. The lesson these parents had learned at such cost—to live each moment with their children as fully and lovingly as they could—belonged not only to them, but now to me. It did not need to wait for deadly disease.