Death Be Not Proud (6 page)

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.

“How’s my blood, Father?” he would ask.

“Fine.”

“Let me know if it goes under a thousand.”

The first series of mustard shots did Johnny great benefit. Of this there is no reasonable doubt, I believe. They stepped up his vitality and made him fresher, stronger. As to the second series I am not so sure. For we decided on an additional course of mustard, and Johnny had these further shots late in August, when the first results seemed good and X-rays were still precluded by the state of the scalp.

Johnny checked out of this visit to Neurological presently and he was well enough, that same afternoon, to see the movie
Henry
V with Frances and my sister Jean and to walk a few blocks. But there was something sardonic in his last word to his favorite nurse when she said goodbye. “Oh,” he waved to her, “I’ll be back.”

I
have before me now a slip of paper on which, that evening he scribbled down an agenda list for the country; it gives some measure of his ardent hopes and fears:

Out in the country he picked up quickly. One could see him brace himself valiantly and set about making up lost time. He did schoolwork and for relaxation worked out mathematically all the odds possible in poker, among many other things. Once he listed all his doctors; once, fascinated like most children by the mysterious entity of the family, he drew up his family tree with great elaborateness. One morning in New York
I
got this letter:

Saturday

D
EAR
P
AP
,

Here is the list of chemicals:

1 lb. acetone

4 oz. Ammonium Chloride

1 oz. Sodium hydride

U-tube (with arms)

2 ft. thick-walled rubber tubing to fit arms U-tube

2 rubber stoppers to fit U-tube

2 ft. glass tubing to fit
inside
rubber tubing.

1-hole rubber stopper into which glass tubing will fit.

Any test-tube into which stopper will fit.

love,

J
OHNNY

I scurried around to pick up all this and in addition to find a cargo of dry ice he needed. What shame I feel now that I had never taken this request for dry ice seriously enough! He had asked me for it several times, but there seemed to be more important things to worry about, and I had neglected to bring it. Johnny repeated his request—gentle soul!—but never loudly enough to embarrass me. Finally I brought it. This dry ice (enough to fill a bucket) was of the utmost importance. With it he was going to perform an experiment he had been working on, in theory, all summer—the liquefaction of ammonia by a quite new process.

One of Johnny’s great friends, and a cardinal influence in his life, was his neighbor Mr. Weaver, who taught chemistry at Andover. For summer after summer, this good and generous man had been Johnny’s best adult friend. Mr. Weaver came over and helped him when his own weakened hands and failing co-ordination were not quite up to the mechanical tasks involved. Johnny insulated a big can with rock wool and pumped the gas as he made it through another receptacle filled with the dry ice. The experiment worked, praise be. Never before had ammonia been liquefied in this precise way. Johnny had truly invented something. His pride and happiness knew no bounds—though he scoffed modestly at what he had done.

Frances wrote: “A leaf in the solution freezes stiff, then breaks at the blow of a knife with an icy clink. Ï triumph! His dark blue eyes shone with joy.” That evening when he kissed her good night he exclaimed, “It’s been another fine day, Mother!”

There were preciously grasped delights that summer. Once Frances found him late at night intently rearranging his rocks in accurate geological classification. Once she had a party, with the ladies in long dresses and their hair up, and Johnny helped serve the food like a serious, conscientious host. He read Christopher Morley’s “O n Unanswering Letters” with delight, and one evening I read aloud a Ring Lardner story about a caddie and he laughed till the tears came. Once I gave him a ten-dollar bill and he asked Frances, “Where shall I hide it?” She replied, “In the only place possible—in bed.” Johnny: “What a woman!”