“I’ll tell McMillan and start it,” I said.
“By the way,” Cranston said as he was about to leave, “did anything happen to Prader?”
“What do you mean?”
“Well, this morning he was OK, but when he came back to the lab a little while ago he was out for heads. There was nothing any of us was doing that was right.”
“Nothing special happened. He talked to some parents, convinced them to let their daughter be treated. That’s all. He really knows his stuff. I tell you, it was something to see.”
“Humph!” Cranston snorted. “Maybe he didn’t think so.”
The protocol called for prednisone—40 milligrams per meter squared per day—and vincristine—1.5 milligrams per meter squared per week. Also included was irradiation to the brain and spinal cord of 1,000 rads over a period of a month.
There were three other protocols Prader could have chosen: the BIKE, VAMP, or POMP programs. The BIKE involved induction of remission with vincristine and prednisone followed by maximum dosages of 6-Mp and cyclopospamide. The VAMP and POMP programs used combinations of several drugs all given at one time, and then used again together to eliminate remaining cells. Prader picked the protocol that was the simplest, had the fewest drugs, and was best tolerated by the patient, the one with the fewest side effects from the drugs themselves.
McMillan wasn’t happy with his choice. “As sick as she is,” he said, “blastic crisis, bone pain, central nervous system involvement, thrombocytopenia—hell, just prednisone and vincristine are too tame for her.”
I must have looked dubious, and even a bit shocked, for he went on hastily: “After all, he’s not putting her in the study. He could have picked any program he wanted.”
“It’s an accepted treatment,” I said.
“Sure, but he could have mixed protocols, or chosen one with more meds. And if for whatever reason he’s set on prednisone and vincristine, he could still have increased their dosages or administration rates.”
“That’s what the whole study is for,” I said.
“She’s not in the study,” McMillan reminded me.
“What I mean is nobody knows which drugs are best, that’s the reason for the study. The other protocols all have side effects. The kids get sick as hell; their hair falls out, they can’t keep any food down, lose weight, can’t sleep. You know the rest—nerve damage, loss of sensation, bladder bleeding, infections. Maybe prednisone and vincristine in these dosages are just as good as any of the other schedules, without all the complications from the drugs themselves.”
“Maybe,” McMillan said. “But the whole idea of leukemic therapy is to kill every cell. Remember? Every cell.”
“But no one knows,” I protested.
“So you stay with the protocols. That is, you stay when you have to. The final results of the protocol study aren’t in and won’t be in for a long time yet. It may be four or five years before the follow-ups are completed and the data tabulated. Maybe, as you suggest, prednisone and vincristine will prove to be as effective as the other programs, and I agree we simply have to know and I’m willing to do what has to be done to find out. But the theory, with all its emphasis on cellular resistance, points to the more drugs the better. So until the final results are in, we ought, where we can, to be using everything we’ve got.
“Everything,” he repeated emphatically, stopping me before I could interrupt, and when I tried to go on he would have none of it.
It was the first time McMillan had ever stopped me in the middle of a discussion. The first time he simply refused to go on, or just to listen.
Maybe the reason I was disturbed by his attitude was because secretly I agreed with him that we ought to go all out, use everything we had. There’s a kind of security in knowing that no matter what happens you’ve done all you could—a kind of hedge against defeat. The implication that it was possible to do more was worrisome; it struck at the very heart of how we viewed ourselves as doctors.
On the other hand, the protocol that Prader had sent down was absolutely acceptable; it was being used all over the country. As he told the Berquams, each drug had already proved its own individual effectiveness.
And yet I was bothered. What if McMillan was right? I’d always thought of the study as a necessary tool, a way of establishing the facts, of finally knowing in a totally scientific way what was best. But what if Mary’s protocol was not the best, the most effective? Then in a very real sense, concerns for truth and knowledge aside, even the idea of a greater good, we were sentencing her to a death that might have been avoided or at least delayed.
I tried to console myself with the fact that no one really knew what was best, but my concern kept intruding. With no study to hide behind, responsibility suddenly moved up very close. The child was very sick; just maybe we should try to do more. For a while I thought of going to Prader, but dismissed the idea as foolish. At best it would be sheer presumption on my part. What could I say that he didn’t already know?
And for the first time I was struck with the realization of what he had to face every day, the decisions he had to make every day, when life and death were the stakes. I had only one Mary to worry about; Prader had hundreds.
III
13
THAT AFTERNOON WE BEGAN Mary’s vincristine; McMillan and I drew it up ourselves. Usually it was the nurses who prepared the medications, but anti-leukemic therapy we administered ourselves. The drugs were so powerful that you had to be sure the needle was well in the vein, that there was a good backflow of blood into the syringe, and that you injected at a slow but constant rate or you ran the risk of injecting the drug into the tissues around the vein, injuring the muscles and skin and causing lesions much like third degree burns. You also had to be sure that the precise dosage was delivered; too much could cause severe and at times life-threatening reactions.
The two drugs inhibited leukemic cell production, but at the same time they also interfered with the body’s already limited ability to handle infections, so that overwhelming bacterial, viral, and fungal infestations could become as much a problem and concern as the leukemia itself.
McMillan was going over some of the minor complications of vincristine so I’d know what to look for, when Mrs. Berquam appeared. She looked worn and she listened quietly as McMillan told her we were about to treat her daughter. He explained briefly how it would be done and the nature of the drugs. If he still had any reservations about the protocol he gave no sign of it.
The next morning when we were on rounds, Berquam himself came on the ward. He ignored us and went directly to Mary’s room.
“Are you going to talk to him about the protocol?” Mrs. Gowan asked.
“We talked to his wife yesterday, didn’t we?” Lang said. “How many times do we have to explain the same thing? I mean, parents talk to each other, don’t they?”
Mrs. Gowan shook her head but didn’t say anything. She just looked at Lang as if maybe he wasn’t responsible for what he was saying.
“I’ll talk to him after rounds,” McMillan said.
By the third day Mary was much improved. We gave her the vincristine after lunch, so it wouldn’t interfere with her eating. Chris, who was taking care of Mary, was in the treatment room when I came in to get the drug. Mrs. Gowan tried to keep as much continuity of patient care as she could by assigning each nurse the same primary-care patients each day. Having to rotate her nurses through three shifts, coupled with the number of patients admitted and all the procedures that were done off the ward, made it an almost impossible task. But she insisted that primary-care patients came first, however much this might strain the already over-strained system. At the very least it gave the doctor some idea of which nurse to ask about which child.
I had thought that Chris and I were on good terms, but after the Berquam episode it seemed to me she was keeping pretty much to herself.
The vincristine was in the refrigerator and when I took out the vial she handed me the sterile
saline. I calculated the dosage, and using the saline drew out the correct amount.
“McMillan should be doing this,” I said. “Berquam doesn’t seem to bother him. For me, when he’s in the room it’s like walking into a lion’s den.”
“Well,” Chris said, “after all—”
“After all, what?”
“Mr. Berquam’s not very happy.”
“That’s obvious.”
She looked as if she was about to give me an argument.
“Listen,” I said, “he agreed to have her treated, didn’t he? All he had to do was say no.”
“Oh, really. It’s as simple as that, huh? All he had to do was say no.”
“Nobody twisted his arm,” I said. “He decided himself. OK?”
Chris just shrugged and turned away. As if what I was saying wasn’t worth her further attention.
I found Mary sitting up in bed, holding a doll her parents had brought her. She was alert enough to glance at me apprehensively. Mrs. Berquam said hello, but her husband just looked through me.
“This won’t take long,” I said to her, ignoring her husband. “If you want to wait outside it might be easier.”
“Don’t go,” Mary pleaded, reaching out for her father who had got up from his chair.
“It’s alright, dear,” Mrs. Berquam said. “We’ll be right outside.”
“It’s not going to hurt,” I told Mary. “I think I can inject it right into the IV tubing and not have to stick you.”
She looked unconvinced.
“Honest. I won’t stick you unless I have to.”
Berquam brushed past me as if I wasn’t there, and followed his wife out of the room.
I was able to use the IV. The injections took no time at all.
“There you are, Mary. That wasn’t so terrible, was it?” She gave me a small, impish smile. “It’s not all bad here. And it will get better, I promise.”
We forgot about the Berquams after that, what with other problems and concerns. There is a pressure in referral and training centers for visible results, an overall expectation that things will be done and done and done until they are accomplished. Professors get promoted by producing; medical students get recommendations by accomplishing; interns maintain their image by getting things done. You are after results, and once you get them you move on. Personal interactions between doctor and patient might be desirable, but the pressure is to get the patient treated, make the diagnosis, correct the problem, get the lab value normal, cure the disease. So we concentrate on the heart, or the lung, instead of on the human being, not because it is easier but because it is expected; we have to.
Mary continued to improve. Her bone pain gradually disappeared and after a few days her mother was able to wheel her up and down the corridor. Prader came by at least once every other day. He was pleased with the way things were going and told Mrs. Berquam he wanted to get Mary home as soon as he could and follow her in the out-patient clinic.
Berquam would come by at night. He would sit in his daughter’s room until visiting time was over and sometimes—at her urging, I suspected—he would wheel her into the corridor. Although Mary was obviously improving, he seemed even more withdrawn than before.
McMillan tried to talk to him mostly about clinical things—lab tests, drug dosages, and the like—but it was more an exchange of data than conversation. Berquam made no effort to hide his hostility. You had the feeling, when he was in the corridor, that he was always watching you, disapproving of what was going on. Rolling Mary up and down the hallway he would slow down to listen for a moment to a conversation coming out of a room, or an argument between two aides. Once, as I came out of the conference room after interviewing the parents of a new admission, I found him standing by the half-open door. He made no answer when I spoke to him, simply moved on.
Although he ignored McMillan and myself and disregarded the nurses, he was not averse to speaking to the parents of other children on the ward; in fact Freddy’s father and he seemed to have become friends. At least they seemed to be spending a lot of time together.
The transplant surgeons called Freddy’s case a success, and in the sense that he was still alive, it was. But a hospital record of seven huge volumes, not counting laboratory results, showed the price.
“Have you seen his chart?” Lang said. “Christ, it took me over a day and a half just to go through it!”
McMillan had made him go through it all. “You’re his doctor now,” he said. “Do you want to rely on what others thought, or do you want to be sure and do it yourself?”
Lang didn’t have to go over the whole chart to know what was wrong with Freddy. His latest transplant—the kidney from his mother—like the cadaver one before, was rejecting, and because of the rejection he was slowly going into hypertensive renal failure. In all probability, if his blood pressure, even on anti-hypertensive medications, went much higher, the transplant would have to be taken out.
Lang could have started Freddy’s history right from the beginning of this latest rejection, from the first day of his fever three weeks before, but McMillan insisted he study the entire chart and he did.
“Here, look at this,” he said, throwing his summary down in front of me. “Five pages just dates, operations, complications, medications, and therapy, nothing else.”
Yes, it was all there—everything that Berquam must have feared for his daughter. If I knew then what I know now I’d have realized those pages contained everything any parent of a chronically ill child would fear.
The Handelmans were understandably unhappy when the cadaver kidney the surgeons had used for the first transplant failed. The anti-rejection therapy produced more complications—infections, bone problems, blotted face, fluid retention, vomiting. The kidney, eventually a rotting piece of tissue, had to be removed.
The parents’ hopes rose again when the second transplant, the mother’s kidney, seemed to be taking. After a year of almost constant hospitalization it looked as if Freddy might finally be able to lead a decent life at home. Now it was all up in the air again and they were back where they’d started.
The Handelmans were feeling pretty desperate, Lang said, after he had interviewed them and taken the history covering what had happened since Freddy’s last admission.
“What did you expect?” McMillan said.
“You want to talk to them?” Lang asked. “They’re still in the conference room.”
“Yeah.” McMillan got up to leave. “Any other prospective donors? I mean any of the other relatives been typed?”
Lang looked stunned. “You’re kidding. They were chewing my head off about this latest failure. I wasn’t about to mention starting the whole thing again. Jesus!”
“Somebody has to. If this one fails, he’s going to need another. The sooner they’re told, the better.”
“Let the surgeons tell them then,” Lang said.
“OK,” McMillan said. “We’ll wait. But somebody’s going to have to tell them, and this admission you’re the doctor.”
Lang didn’t look too convinced. As the pediatric house staff on 402 we ran the ward and wrote the orders, but on the surgical patients—those children admitted to pediatrics only because of their age but for surgical procedures—we really acted as consultants. While we watched what the surgeons did and could complain or make trouble about what they decided to do, even cancel an operation if the child had a cold, or a rash, it was still they who made the major decisions. The Handelmans had been around long enough to know it, too.
It took a few days for all the tests on Freddy to come back. Meanwhile I could not help noticing Berquam and Handelman talking seriously during the evenings I was on, and cutting their exchange short if I happened to be passing by. I didn’t know why this irritated me so, but it did. Why I should feel they were talking behind my back.
All Freddy’s tests—the arterial studies, the kidney function tests, the renal scan and the radioactive washouts—pointed to rejection. At the same time
Lang was having real trouble keeping the child’s blood pressure under control. Even with massive dosages of Aldomet, Diuril, Aldactone, guanethidine, Minoxidil, and propranolol, his diastolic was still averaging 120. In fact, the dosages were getting so high that Freddy was becoming more and more lethargic from the medications building up in his bloodstream.
A biopsy of the kidney was called for, to be absolutely sure it was rejection and not something else like an occult infection, an obstruction, or even the more remote possibility of acute tubular necrosis. The parents balked at the idea. Lang had mentioned it to them and they demanded to know why, if all the tests showed rejection, their son had to be subjected to a biopsy. He tried to explain, on two occasions, but they kept pushing him on finer and finer points and finally insisted on questioning the surgeons who had suggested the biopsy in the first place.
“They’re getting pretty stiff-necked,” Lang said. “Do you suppose Berquam’s behind it? I mean after all, the morose sonofabitch works in a hospital. He’s been getting mighty chummy with Freddy’s father. I’ve even seen the two of them leaving here together.”
“So what?” McMillan said. “Don’t worry about it. Just do your work. Besides, what can Berquam tell the Handelmans? They know more about transplants than he does. Just spend more time with them yourself, and make sure they know what’s going on.”
It wasn’t that easy, though, to forget about Berquam. It was getting so that whenever you wanted Handelman you found Berquam with him. It was plain that Berquam was getting involved with the other parents too, and not in a casual way, either. As a rule, parents mingled almost aimlessly, but with Berquam in the picture what had been casual encounters seemed to become meetings. More than once as I approached these meetings I experienced the same sudden embarrassing silence. I began to wonder why I was feeling so suspicious.
As Freddy’s condition worsened and he went more and more into renal failure, the Handelmans became increasingly hostile. In a sense, they simply stopped going along with us, making us justify every little thing we did or wanted to do, even to the point of questioning the routine things like daily hematocrits and electrolytes. Why did we have to draw blood every day? Why did the nurse have to wake him up last night just to take his blood pressure? Why do you have to repeat that test? What did that potassium level mean? Why another scan? Until Lang was fairly going nuts explaining and reexplaining. But when they started asking highly technical questions, about things like the dosages of ALG we were using, for instance, and peripheral vein renin levels, he really got hot under the collar.
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