by John Gunther
The house at Madison was, from almost every point of view, perfect for a convalescence. It immediately faces the Sound, with a broad scallop of private beach. Johnny’s room was upstairs and, until the end of the summer anyway, he did not have too much difficulty getting up and down. Here were his most precious books, his specimens, his gramophone records, all the paraphernalia for his studies. Downstairs he could loaf on the long balcony, putter about in the sand, lie with Frances in the sun, make barbecues, wade, and even play a little with his boat. His workshop and laboratory were in the garage a hundred yards away. Here were chemicals, mechanical apparatus, rocks, laboratory equipment, and the vast heterogeneous assortment of things a boy collects and works with. Johnny was not bedridden. He never was that summer. There was not a single day in which he did not spend an hour or so in his workshop. He demanded that he be allowed to do his work in his own special way. Thank goodness he was well enough for that. He loved every minute of that summer. Frances was with him all the time and I came out weekends. Our friends dropped in and Frances’s brother and my sister were steady visitors. We had a Japanese cook who enchanted Johnny not only by the splendid things he made to eat but by his skill arranging flowers from the garden. “Tom,” Johnny announced to him one evening, “you are an artist.” But I do not know whether it was a lamb chop or a spray of roses that he was referring to.
Particularly I remember Johnny’s considerateness, even when he got sicker. of course he wanted his classmates and other friends of his own age to come for weekends, and several did. But he would hesitate to ask them, for fear they might be bored—inasmuch as he himself could not join them in sports or outdoor games. He was vehemently worried that his illness might upset our future plans and about how much it was costing and about Frances’s work and my book. I was less than halfway through Inside U.S.A. and hopelessly behind. Johnny knew that the deadline for delivering the MS was October 1, and he knew perfectly well that I could never make it. His first question when I came out, expressed with lively irony and disbelief in the veracity of what I would tell him, was, usually, “Well, how many whole chapters did you write yesterday?” Then: “You’d better hurry!” As to the work Frances was doing he would remonstrate with her gently and then encourage her, “Remember your destiny, Mother!”
This is from the diary Frances was keeping:
Yesterday, wet, cold. Bought peaches and strawberries. Johnny dressed and cheerful when I arrived. Read Henry V—Johnny read aloud the great speech. We recalled English chronology. Nap before dinner. . . . John came at eight. We played “Twenty Questions.” John’s thought: Henry V film; Johnny guessed it. Mine: top button on John’s pajama jacket. Johnny’s: Prof. Einstein’s signature; we didn’t guess it.
These were some items from his conversation at about this time, as taken down by Frances:
I don’t know what I’d do without you, Mother.
I think I’d like a bottle of champagne at school for my birthday.
My thinking is independent of my temperature—it just depends on my stimulants.
I’m going to write a theme “On Being a Guinea Pig,” with teleological aspects.
I handed in my theme on theories of hom work just two days late—as proof of my argument and justification for not having done it on time.
In my Fourth Year, I’d like to take just Math, with a tutor, and Relativity with Professor Einstein.
A major problem continued to be what to tell him. If the tumor was indeed mostly gone, how then explain the continued bulging? But beyond this there were larger questions. Why was Johnny being subjected to this merciless experience? I tried to explain that suffering is an inevitable part of most lives, that none of this ordeal was without some purpose, that pain is a constituent of all the processes of growth, that perhaps the entire harrowing episode would make his brain even finer, subtler, and more sensitive than it was. He did not appear to be convinced. Then there was a question I asked myself incessantly. Why—of all things—should Johnny be afflicted in that part of him which was his best, the brain? What philosophical explanation could one find for that? Was all this a dismal accident, purely barren and fortuitous? Beethoven was struck deaf and Milton blind and I met a singer once who got cancer of the vocal cords. But if the connection of circumstances was not fortuitous, not accidental, where was justice?
Johnny said to me once, “The worst thing is to worry too little, not too much. Let’s keep up a tension.” It was as if he were girding himself for the struggle only too obviously under way, between life and Death.
Crisis followed crisis now in a series of savage ups and downs. The flap, which we called the Bulge or the Bump, got slowly, mercilessly bigger, until it was almost the size of a tennis ball sticking out of his head. “Oh—it’s the way those things go after X-ray,” we tried to explain it away. He accepted this—perhaps—and was cheerful and determined. Meantime we came to learn a new medical word that pursued and haunted us for almost a year—papilledema. This means, to put it roughly, a forward protrusion of the optic nerve, which is an extension of the brain itself. When pressure exists inside the skull, causing damage to the optic nerve, the amount of injury may be calculated with an ophthalmoscope. When the eyes are normal, the papilledema is zero. Then degrees of injury are measured in an ascending scale to 10 diopters. The higher the papilledema, the worse the situation. Before the operation Johnny’s papilledema was a full 10; when we left the hospital, it had dropped to 2. Now it hovered between 4, 3½, and 4 again. Always the first thing a doctor did was to measure this wretched papilledema. Another frightening factor was that though most of the cranial nerves were still normal, there had come a slight lag on the left side of the mouth. Also Johnny had lost a shocking amount of vision. His eyes were more or less all right when he looked straight ahead, but what are known as the visual fields had become sharply restricted, and he could not see well to the side. The doctors called it “a left homonymous hemianopsia.” It was as if he had an invisible blinker on the side of each eye.
Nobody should get sick in or near New York in July or August. Putnam and Mount were both on holiday. On July 12 I brought Johnny in to Traeger for a check. Traeger did not like the look of the bump and sent us to Masson, who had taken Putnam’s place at Neurological. Masson would not see Johnny that day, which meant that he had to undergo the exhausting business of a hundred-mile drive back to the country, then into town again, and then back once more. Then Masson took one look and said flatly that Johnny could not live more than a couple of months. That ugly analogy came up again—his brain was like an apple with a spot in it.
On Wednesday, July 17, 1 was back in town. At about mid-night Frances called from Madison. The bump had opened and was leaking pus.
From that day until a month before he died, there was never a single day in which Johnny—patient, brave, humorous—did not have to go through the laborious nuisance and ordeal of having his head dressed and bandaged.
This leak in the bump was not in itself serious; it was a “stitch abscess” caused by a couple of tiny stitches left in the original incision. But it worried our local doctor in Madison, and Johnny began to take penicillin to avert infection in case the wound should widen where the bulging scalp was stretched thin and taut, or in case there should be another ulceration. We prayed that this would not happen. It happened, though. The bump burst open in another place. I got another hurry call from Madison at noon on the twenty-fourth, drove out at once, and Johnny was back in Neurological that evening. He was not worried much; only annoyed that his work was being interrupted. But he was skeptical when we said that he would be hospitalized only for a day or two. “Once they get me here,” he declared, “they keep me.”
We had heard, meantime, about a magician named Wilder Penfield in Montreal. Half a dozen folk had suggested that we get in touch with this renowned surgeon who, like Putnam, has international rank and who, like most great brain surgeons, is a poet. Traeger tracked him down, and he agreed to come to New York to have
a look at Johnny. It was interesting to notice how impressed Neurological was with Penfield. The manner of the whole sixth floor abruptly changed. Previously Johnny had been a hopeless case; now he was a phenomenon of considerable interest. Putnam interrupted his holiday, and he, Penfield, Traeger, and another doctor spent the morning in consultation. We had told Johnny casually how eminent Penfield was, and his greeting to him was quite characteristic. He measured Putnam and Penfield together, and then asked, “Where’s Cushing?”
Frances often helped Johnny to time or rehearse his little jokes, but this one caught us unawares. He knew perfectly well where Cushing was. He was meeting two of the three greatest brain surgeons, and would probably be meeting the third quite soon.
Penfield said something about the fine recovery he was making, in order to reassure him.
Johnny replied, “I’m not so much interested in the spectacular nature of my recovery as in the exact seriousness of my complaint.” That held everybody for a while.
Penfield spent an hour on the slides; always, in a thing of this hideous kind, the possibility exists of mistaken diagnosis, and the tumor might have changed for the better or worse. We waited, and then with everybody listening Penfield cut through all the euphemisms and said directly, “Your child has a malignant glioma, and it will kill him.”
He wrote in longhand on Johnny’s chart:
The neoplasm is obviously a malignant glioma. The removal and decompression has given him some longer lease of life, and it has been a happy interval. The presence of two small cysts within tumor, as proved by Dr. Putnam’s puncture, is consistent with glioblastoma and it is apparently present beneath and outside the dura. The scalp defect is obviously the result of pressure necrosis, not primary infection.
I would recommend healing the area if possible in a few weeks. Further X-ray treatment only when radiotherapist decides the skin and brain will not suffer from it.
If operation is decided upon, occipital lobe amputation might be carried out with some sort of skull closure. This would not prolong life much if at all. It might make him able to be up and active over a greater portion of the life.
I can see nothing that could have been done up to date that has not been done. This is the tragedy of such cases.
Of course no one told us that complete occipital lobe amputation would mean blindness.
We asked people the next few days how the end would come, and once more new horrors, new dreadfulnesses, were disclosed. One of the nurses said that in tumors of this type the patient gradually lost all function, even that of control of his own secretions, and died in the end like a kind of vegetable.
Johnny did not lose function. He lived almost a year after this, and he did not die like a vegetable. He died like a man, with perfect dignity.
Now we struck out hard on new paths. The rest of the summer is the story of pillars in a search. There might be some ray of hope somewhere despite Penfield’s death sentence. But we must act quickly. Frances thought that physicists or atomic scientists who worked in the medical field during the war might have discovered something new about brain tumors unknown to the public at large, and I wrote or telephoned to doctors all over the country to investigate this possibility. The thought never left us that if only we could defer somehow what everybody said was inevitable, if only we could stave off Death for a few weeks or months, something totally new might turn up. What we sought above all was time. Our search was, to put it mildly, further stimulated because at least two doctors, after the Penfield consultation, urged us to put a cap in Johnny’s skull, which would eliminate the bump. Also, by driving the tumor inward, it would kill him. Euthanasia is, of course, forbidden in the United States. But the doctors wanted to be merciful.
I wrote to Hutchins at the University of Chicago, to both Lawrences at the University of California, to the head of the tumor clinic at Michael Reese in Chicago, to a splendid physician in Boston who had just come back from Russia, to one specialist who was experimenting with radioactive phosphorus, to the head of Massachusetts General, and to our friend Professor Francis Bitter. We asked one and all the same question—did they know anything new? Was there any hope?—particularly in developments in medical physics. One and all made the same reply, in painstaking and courteous terms, that nothing at all was new, that Johnny was having the best and most expert medical care the entire world of science could provide, that no new discoveries at all had come in this field, and that, therefore, hope was nil.
One morning Frances found an item in the Sunday Times, hardly two inches long, describing some remarkable ameliorations of tumors—not brain tumors, but just tumors—caused by intravenous dosages of mustard gas.
This is, of course, a deadly poison. Scientists had come across it as a possible treatment of cancer directly out of military experiments. Mustard gas kills by attacking certain cells with abnormally fast growth. What is a tumor if not some-thing in the body growing fast? Hence the transposition was easy to the hypothesis that mustard, or HN as the doctors called it, might conceivably pick out and attack tumor cells, while not harming appreciably other cells, if administered in tiny doses with great care. Moreover the researchers had discovered that mustard had mysterious and extraordinary effects on various other elements in the body. It seemed just the sort of thing we had hoped the scientists would tell us about. None of my eminent correspondents had so much as mentioned it. But there it was plain as day in the New York Times.
Frances, through friends in New Haven, set out on the trail of this mustard. We chased it to the University of Utah, to an experimental station in Maine, and to the offices of the American Cancer Society. After a week we tracked it down finally at Memorial Hospital, New York City—ten minutes’ walk from our apartment. What decided us to use it was the word over the telephone of one of the most celebrated physicians in the United States: “I f it were my son, I’d try it.” And certainly there was nothing to lose. Nothing at all to lose!
Traeger got in touch with Rhoads, the head of Memorial, and I went to see Craver, the medical director there, who put at our disposal Dr. Joseph Burchenal, a young scientist with a fine war record who was in charge of the H N experiments. He drove out to Neurological with me, and we put it up to Mount. Now it is a ticklish business to mix up hospitals. It is a very rare thing for a doctor affixed to one hospital, like Burchenal at Memorial, to do work at another like Medical Center. Let me thank everybody who generously helped waive the rules. Within twenty-four hours of first talking to Craver at Memorial, I saw the first injection of mustard gas ever given at Medical Center administered to Johnny. It was all so impromptu and urgent that I myself carried the precious, frightfully poisonous stuff from one hospital to the other.
During all of this Johnny was reasonably confident. At I do not know what cost to his inner resources, he maintained the boldest kind of front. Once Bill Shirer and the late John T. Whitaker dropped in; each had just had a serious hospital experience. “What did you talk about?” I asked Johnny when they had gone. Reply: “It was very boresome. We discussed our operations.”
Frances gave him some science fiction once. “The trouble with science fiction,” Johnny said, “is that it’s bad fiction and no science.” He announced one morning that he wanted to be five things—a physicist, a chemist, a mathematician, a poet, and a cook. He added soberly, “And since I’m only six-teen, I think I have a good start in all.” Once he asked for a bath after dinner, took it, and later congratulated Frances on her self-restraint in not coming in to wash him!
She arrived at the hospital as usual at noon one day, and he wasn’t in his room. She rushed down the corridors and found him out in the garden, all dressed, lively and triumphant. “ I escaped!” he told her with great satisfaction, as a worried nurse came up. It was at about this time, too, that, discussing his various doctors, he said, “Maybe I will be a historic case!”
But after Penfield’s visit he was very wan and dispirited. He would stand in the doorway and look at us tentatively
, appealingly. When he telephoned in the mornings and evenings, his voice had no body. The frightful strain had begun to drag him down. Half a dozen times, when Frances tried to keep him from doing too much, he would exclaim again in protest, “But, Mother, I have to get my work done!”
He could not have survived this summer had it not been for his mother’s brave and understanding spirit. So that he would not be frightened she talked to him as if casually about the narrow escapes she and other people had had from Death, and it relieved him greatly to learn that several of those whom he loved had almost died. She made the most of every medical ritual, and taught him to squeeze out of every conceivable occasion, no matter how painful, every atom of humor possible. She read him poetry on meditative and religious themes, and he made his own anthology of poems he liked by reciting them into a transcribing apparatus, and then playing them back when the mood was on him. Here, too, the sharp demarcation he made between Frances and me, based on his solicitude for us, became manifest. With Frances he talked of Death often; with me, almost never.
Johnny got his first doses of mustard between August 1 and 5. It had never been tried on a brain case before. Usually mustard makes a patient very sick at first. Also there was considerable local pain in that the veins in his arms were difficult to find, and the injections produced heavy bruising. Johnny puked plenty the first day, but not after that. Then there had to be a close watch on aftereffects, since one of the results of mustard is to drive the white blood count down. The figure may drop alarmingly, enough to scare out of his wits any doctor who does not know what is going on. The white blood corpuscles serve an important function in combating infection, and so it was necessary to keep dosing Johnny with huge amounts of penicillin too, as compensation for the temporarily lost white cells. When we drove up to the country we filled a rubber bag with dry ice and chucked the penicillin in it, and for over a month Johnny had to have a blood count every day, which was still another item in the onerous routine he had to undergo.
