My brother David died over 50 years ago and before my birth. My parents rarely spoke about David as we (the 4 siblings) grew up. He was certainly not forgotten, but I think the memories were too painful to discuss. As a result, David's life and death rarely entered my consciousness. This, of course, contrasted greatly with his influence on my parents and his twin brother Josh.
My mother, now 81 (my father died 8 y ago), recently shared with me the journal that you are about to read. It unflinchingly documents the journey they all took from the time of David's diagnosis with a Wilms tumor in the year 1955 to his death in the year 1956. On a personal level, I was incredibly moved to go back in time and experience an event that profoundly altered the lives of my parents and brother and indirectly affected all of us. The historical details and the vivid description of the emotional toll on my mother, I think, offer insights to all of us in the field of pediatrics.
For these reasons, I asked my mother for her permission to try and get her journal published. A very private person by nature, she immediately agreed, as long as “you think it will be of help to others.” Barton Kamen, MD, PhD, the editor of the Pediatric Journal of Hematology and Oncology, was very gracious in consenting to read the diary and providing a venue for its publication. I hope each of you will find some meaning in the story that unfolds below.
Nor the Years Condemn: 1955
In the past, I have frequently marveled at the appalling frankness and minute detail with which some writers described personal tragedies. There had seemed to me a violation of intimacy, which I found difficult to accept. During the past year, I believe I have come to comprehend what motivated such writing. As our own personal tragedy has intensified in its starkness, I have felt an ever-growing urge to set down on paper what has happened. It seems as though by reducing these experiences to pen and paper, I might achieve a cleansing of the soul, a purging of the emotions. Writing this short history of David is designed as counsel neither of hope nor of despair. Rather, it is an account of inexorable fact.
David and his fraternal twin Joshua were born on July 4, 1953 in Washington, DC. Joshua weighed 7 lb 3 oz and David 4 lb 4 oz—consequently he had to remain in the premature nursery for 10 days after my return from the hospital with Joshua. He thrived and developed normally. When he was 1-year old, he weighed 20 lb, having more than quadrupled his birth weight.
Looking back, this first year now seems uneventful; though it was hectic enough while it lasted. No sickness and only 1 really terrifying experience. This experience was rather curious in the light of subsequent events. When David was about 4 months old, Joe, his father, while playing with him, suddenly felt a small lump on his back. We immediately called the pediatrician. Dr Lewis maintained that the lump had no particular significance. Noting what, I suppose, must have been a woeful expression my face, he remarked, “It's not cancer, if that's what you're worried about.” “As a matter of fact I was thinking of that,” I replied, “but, on second thought, I don't suppose cancer occurs in children this young.” “Even small babies can have cancer,” said Dr Lewis, “but I'm convinced that David's lump is nothing of the kind. However, if you are at all concerned, I'll send you to see a children' surgeon.” So, being foolish parents I suppose, we marched off to see Dr Allen the following day. He assured us that the lump was merely a harmless fatty tumor, not requiring any medical attention, and the incident would have been forgotten, except for the fact that Dr Allen operated on David for a kidney cancer 9 months later. This coincidence seemed to set the tone for the nightmarish quality of David's whole sickness.
But, to reiterate, our first year with the twins cast no shadows before it. Joshie had a hard time teething, and I used to get upset because I felt that both boys were fussier than other babies of their age. Having abjured the horrors of comparing children's development, I, with my equally insistent friends, vigorously embarked on a course of comparing our progenies' advances. Remarking “what does it matter when babies start walking, they all walk sooner or later,” we jealously eyed each baby's first steps, mentally counting the months that separated it from our own offspring.
We walked a lot. Friends and neighbors often complimented me on having the boys out in all weathers. Honesty unfortunately compelled me to admit that it was much easier to keep them happy walking than in any other way, and that I had become a fresh-air fiend in sheer self-defense.
Strangers seemed fascinated by our twin carriage, and I toyed with the idea of making a collection of their remarks. Thus, when passed by a group of children, the invariable cry was “Look! She's got two babies!” As if I did not know! Kindly ladies would peer into the carriage at sturdy, brown-haired, brown-eyed Joshie and slightly built, blue-eyed, blond David and exclaim, “Aren't they identical!” To which I would reply, “Not that I've ever noticed.” Young mothers would sigh, “However do you manage?” To which I would answer untruthfully, “Oh, there's really nothing to it.”
In May 1954, when the boys were 10 months old, Joe had to go to California for several weeks, in connection with possible employment at Stanford University Law School. The boys and I spent this time with his parents in Springfield, Massachusetts. Inevitably, David came down with his first cold the day before we were to leave, and Joshie similarly obliged 2 days after our arrival. As a result, the visit was somewhat noisy and hectic for all of us, even though the folks claimed (probably quite truthfully) that they enjoyed every minute of our stay. Robert Wolfson, a pediatrician and distant relative, came to the house and gave the boys a thorough examination, finding nothing worse than a common cold.
Shortly after Joe's return he received an appointment to teach at Stanford Law School and we began preparations for our move West.
It is Monday, July 12, 1954. On the following Thursday, we are to leave Washington for a 2-week vacation in New Hampshire before flying to California.
Joe's parents have prepared everything for our arrival in their Spofford, New Hampshire, house, including a supply of baby food, 2 cribs, and diaper service. We have decided to take the boys for a final checkup with Dr Lewis, even though their next monthly checkup is still 2 weeks away, as we have to collect various papers from his office anyway. Our main concern, riding to his office, is lest we forget to pick up the “certificates,” which we have asked him to complete for our baby record books.
We arrive in high spirits at 10-o'clock in the morning. The boys are weighed. Weight gain is normal, though, in David's case, somewhat lower than what I had expected in view of his constantly voracious appetite. Then, while Dr Lewis is examining Joshie, his associate, tall, lanky Dr Connor examines David. Joe is with Joshie. I am with David. I shall never forget the scene. Looking absently out of the window, as if to concentrate all effort on his probing hands, Dr Connor, as usual, presses David's abdomen. But, not as usual, he continues to press and to gaze out of the window. He remarks, “So you are planning to leave this week, are you?” Lightheartedly, I reply, “Yes, if you check us out OK.” Then our world of normal joys and sorrows receives its first blow, “There is a mass in David's abdomen which I should like to see disappear before you go.” He places my hand on David's abdomen, but I can feel nothing untoward. He advises us to give David an enema to see whether stool causes the mass. We drive home in a daze saying very little to each other and stopping on the way to purchase an enema syringe.
We give David his first enema, and several little hard balls appear. We were greatly relieved, but then Joe, who has been able to detect the swelling, says it is unchanged. I can still feel nothing at all. Soon, Dr Connor telephones and seems very pleased that the enema has produced a result. His evident relief, coupled with his suggestion that he pay a house call that afternoon, does nothing to alleviate our unspoken but not nameless fears.
He examines David and says, “I should like him to be admitted to a hospital today.” Now we ply him with questions and he tells us that the mass may be a tumor on the kidney. Yes, it may be a malignant tumor, but extensive tests are needed to determine whether this is so.
Still in a daze, we drive to Children's Hospital. David has never seemed happier as he gaily observes traffic from his back seat. I say to Joe, not really believing my own statement, “If this involves his kidney, and he has to have it removed, I don't suppose we'll have David with us for long. I don't believe one can live with only one kidney.” Such was the extent of my haplessly short-lived ignorance of how much the human body can endure and yet sustain life.
On arrival at the hospital, David is given some chemical and then x-rays of his kidney are taken at short intervals. The procedure lasts well over an hour during most of which time David cries in fear and outrage. Because of radioactivity, Joe and I are not allowed in the room, except in between pictures. Finally David is taken to his room. It is a pleasant room—there is a bed for me, as the hospital allows rooming-in, which means that I may remain with David 24 hours a day. Fortunately, my mother is visiting from Canada and will be able to look after Joshie. This has been the first time since their return from the hospital after their birth that the boys have been separated even to the extent of a short car ride. Nor have Joe and I ever been simultaneously away from them during their waking hours.
Two or 3 more doctors examine David that afternoon. Among them is Dr Allen, the surgeon. He seems quite animated about something, and I gather he is expounding a theory to the others. Later he tells us that David's swelling may be an enlarged spleen—which would put his complaint in a completely different, and curable, category from a kidney tumor. We ask, “Even if it is a kidney tumor, must it necessarily be malignant?” The answer is, “In child of David's age, almost invariably yes.”
David seems restless in his crib, though no longer frightened. Suddenly, we realize that we left at home a blue blanket to which he has been developing a vague attachment. Joe drives home to get it, and David is soothed and goes to sleep easily. This is the last time that we could conceivably have forgotten the blanket. His attachment to it grows stronger the sicker he becomes, until he clings to it day and night.
That night, I sleep better than I should have thought possible—it makes me wonder at how callous I can get. But one word pounds in my dormant brain and dominates my dreams, “Spleen—spleen—spleen—spleen.”
David does not seem too upset by the hospital routine. Joe comes early next morning and David acts much as usual. Around 2-o'clock, while David is asleep, Dr Connor calls us into the hall, “Well, it's the kidney.” For the first and the last time, I scream out loud in protest, “No! My David! No!” After that initial outburst, acceptance supersedes protest sporadically, though never completely.
Dr Connor tells us that David's kidney should be removed immediately. In reply to our question, he assures us that it is perfectly possible to live a normal life with but 1 kidney, “That's why God gave us two.”
David is given a shot to make him sleepy. But, as if knowingly, he remains wide awake for over an hour, while Joe carries him up and down, up and down the long corridor outside his room. He does not cry, but he refuses to go into his crib, and he refuses to leave his father's arms to come to me. So Joe walks with him, up and down, up and down, whereas I walk behind them. Finally, we are called to a little playroom outside the operating theater. It is overflowing with lovely toys, which we gaily—we hope—point out to the ever-wakeful David. Then he is taken from us into the operating theater.
Dr Lewis tells us that before the operation can begin, it is necessary to open a vein in case a blood transfusion should become necessary, and also to allow for postoperative intravenous feeding, and that this procedure may take some time. It does. Perhaps 20 minutes elapse before the actual operation begins. Dr Lewis informs us that it is expected to last about 2 hours. From the playroom we can see the door to the operating theater. Peering through its glass is an elderly little man with a shock of white hair. He is Dr Humphrey, the radiologist. Dr Humphrey is to become our good friend. This is our first glimpse of him.
We leave the playroom after a while and go the hospital cafeteria. At the door, we engage in a senseless wrangle with the cashier, who, it seems, needs to know exactly what we intend to consume before allowing us to enter, so that she can be paid in advance. We settle for iced tea. Like 2 puppets, we collect our tea, find a table, sit down, and sip systematically. All the while I think—here I am drinking tea and wondering whether I should eat a cheese sandwich too, but I cannot anyway because of what we told the cashier when David is being operated on for cancer , and maybe it would be better if he were to die during surgery. We rise and take a walk around the block. As we leave the air-conditioned hospital, the heat strikes us with the impact of a physical blow. I realize that this is Washington DC in July, and that for the past 24 hours we have left this reality and begun to live in a different world.
We return to the playroom and wait. And I find myself blurting out my guilty undercurrent of thought, “If this turns out to be cancer, I almost wish David would die now. How, from a purely selfish point of view, can we go on living with the constant threat of cancer recurrence and what it means?” With inexorable logic, Joe replies, “We must!” I am to discover that this “must” is the only immovable, irresistible reality, and indeed, a source of comfort in the months to come. But a whole year elapses, David is hemorrhaging in Children's Hospital in Boston, Massachusetts, and for the first time, I truly believe death to be imminent, before I recognize with finality that I want David to live as long as possible and that I do not wish his life to be shortened by a split second, however sick he is and however inevitable and dreadful the end may be.
Though I have just been to the toilet, when Dr Lewis enters the playroom, I sit down to suppress the nervous urge to urinate. He tells us that, of course, pathologists must confirm the surgeon's opinion, but there is in effect no doubt that the tumor was malignant as expected. For the first time, David's probable death sentence is given an appellation—and a human one at that. He has a “Wilms” tumor, named after the man who discovered it. It is a malignancy peculiar to children, and originating always in the kidney. The operation was “successful” as far as could be seen. The tumor came out clean and unruptured; no complications had set in. The chances were about 1 in 3 that the tumor would not recur. If it does recur, this spread would be repeated and fatal. The first 3 years were the crucial ones. This last piece of information is my only grain of comfort. With typical human hope, I think that perhaps 3 years from today we shall feel relieved. One of my father's favoriteaphorisms passes through my mind, “Better an end with terror than terror without end.” (This, as I have pointed out, is something about which I have since changed my mind, at least as of this moment of writing when David, looking like a living skeleton, looking like the postwar photographs of Hitler's concentration camp survivors, clings stubbornly to the last shreds of his little life.)
I dread our first sight of David, but he looks surprisingly well. His color is far from ashen, as I had visualized it, and he seems peacefully asleep. He has a needle in his foot, leading into a tube suspended from a pole above his bed. Through this, he is receiving IV nourishment. The purpose of this, the doctors explain, is to avoid loss of strength during the days immediately after surgery and is a routine procedure.
Left alone with David and a nurse, I weep unrestrainedly. For the first time since our visit to Dr Lewis' office on Monday, it seems there is nothing to do and no one to conceal my feelings from—no results of tests or operation to await—nothing, but to let full realization sweep over me. The pretty student nurse tries to comfort me, “He's doing fine—he'll come out of it OK.” This type of consolation then and subsequently makes me feel even worse, by reminding me that this is no ordinary one-blow illness where the patient gets sick and then recovers—that the chief terror is yet to come.
We slip easily into hospital routine. I take care of most of David's needs, which are few, myself. He eats little but is fairly comfortable. The IV is a nuisance to watch, as it is always stopping, going too fast or too slow. I learn to gauge the timing and to call the nurses, whose expert manipulation of tubes and clamps adjusts the flow of the liquid.
All the nurses are kind and gentle, particularly the student nurses. In our future hospital experience, I am to confirm my initial impression that the student nurses are almost invariably more sympathetic than the graduate nurses, who have, understandably, become somewhat immune to human suffering. My favorite on the floor is a nurse's aide, who is on duty in the evenings. She is an immense, motherly woman, who has numerous children of her own. She sings David to sleep at night and promises to watch him while Joe and I go out to eat.
Breakfast and lunch I eat in the hospital coffee shop, which is run by volunteer workers. There are good milkshakes and Danish pastries. I am quite preoccupied with food these days. I look forward to all meals, and calculate how many calories I have consumed. In the evenings, Joe and I go to restaurants to eat—this is my only time away from the hospital.
My preoccupation is not only with food. I have recently had an infection as a result of which one nail grows crookedly. Previous to David's illness, I used to wonder whether it would grow out before we arrive in California, and whether I should change my hair style, so as to look my best when meeting our new friends, neighbors, and colleagues. Much to my amazement, I continue to wonder about these things. I stare at my finger and into the mirror each morning and night. I have not yet learned, as I shall learn gradually, that, at least in my case, mundane and self-centered thoughts do not depart in the face of great tragedy. And I am also to find that, regardless of best intentions, trifling annoyances continue to be felt despite, and in addition to, all overwhelming nagging worries. In short, personality changes do not necessarily accompany even the most drastic changes in circumstances.
David begins to receive x-ray therapy to the abdomen and lower part of the chest the day after surgery. This, it is explained to us, is designed to kill any microscopic tumor cells remaining in the body. I break down once more when David is first placed under the cumbersome x-ray machine. How can we go on living with this thing? After adjusting the machine over our wailing David, Dr Humphrey leaves his assistant to supervise the 10-minute treatment and draws us outside for the first of many talks, “for the children's sake, for Joshua's and David's sake, you can't go on like this,” he admonishes me. Through my tears, I nod impatiently. I am perfectly well aware of this, but once in a while one just has to give in to self-pity. We ply Dr Humphrey with many questions. The upshot of his information is: nobody knows the cause of David's tumor. It is quite possibly congenital. No, there is no more reason for Joshie to be similarly afflicted than for any other child. Were he an identical twin, a different story. (At this point we heave a sigh of relief. We have always been rather smugly pleased not to have 2 children looking exactly alike, have dressed them differently, and bought them different toys, but never in our wildest nightmares for a reason like this!) How to treat David? Like any normal child. “Just use your common sense and don't bounce him too hard for a while. Don't treat him like a rubber ball and throw him up in the air.” Prognosis? The chances are about 1 in 3 that the tumor will not recur. If it does, it will probably appear in the lung.
Our worst fear is of the possible pain and suffering that lies in store for our David. The news that the lung may be affected upsets me enormously. I clutch my chest theatrically and weep again. Dr Humphrey assures us that with modern medicine, David will not be allowed to suffer.
I am forever pressing Dr Humphrey about the statistics. One chance in 3? Is there any break-even point after which the chances are better? Finally, Dr Humphrey says something which forever silences me on this point and which is the most valuable help I have received to date, “What do you want to know all these statistics for? As far as you and David are concerned the chances are 100% or nothing.”
THE OUTSIDE WORLD
David makes a rapid recovery and is allowed to return home after 2 weeks, though he must return to the hospital daily until he has completed his x-ray treatment.
One of the hardest tasks I—and I believe Joe also—have ever faced, is to resume “normal” living. In the hospital, we lived in a private world. We existed in a kind of suspended animation, concerned with David's day-to-day progress and, above all, not faced with other people.
Now, we must decide what to tell these other people. Hitherto, in response to solicitous inquiries from friends, we have told them, “David had a defective kidney and it was found best to remove it since human beings can function equally well with but one kidney.” “How did we discover it?” “Well, the doctor found a swelling—there were no other symptoms because the organ was removed before it had a chance to harm David's system.” We now determine that this is all we shall divulge of David's condition. We fear that if we tell the truth, he will never be treated quite the same and we shall have taken away his slim chance of leading a normal life.
From David's point of view, I am still convinced that we did the right thing. (The only people who know the truth from the beginning are Joe's parents and my widowed mother.) But I am equally certain that we could have lightened our own burden by sharing our knowledge. My waking-hour nightmares of what we should all have to endure in the event of recurrence were mingled with daydreams of the sheer relief it would afford me to tell my friends, “David has cancer and will never be well again. We have known this since his operation.”
I am of course besieged with neighborly solicitous questions when I take the boys out walking at home. Some are satisfied with asking what was wrong, and is David doing OK now? Others are more persistent and sometimes probing and tactless, “He's lost weight, hasn't he?” (Actually we find that David has lost only a pound or 2 and is to lose only a little more before he regains his former weight.) “You can tell he's been sick, can't you?” “I suppose you'll always have to be extra careful with him having only one kidney, won't you? I know someone who had a kidney removed and they always had to be careful about what he ate.”
But however innocuous and kindly meant the inquiries are, they make me feel unbearably heavy-hearted and I must force myself to go outside at all. Worst of all are the strangers' comments in which I have hitherto taken half-scornful pride. “Isn't it something to have twins!” The mere sight of our twin stroller makes me want to burst into tears—but I don't. One consolation is our projected move to California as soon as David's x-ray treatments are concluded. Away from people who have known us in more carefree days, perhaps I shall be less unhappy. At any rate, it will be easier to deceive them.
We have been warned that David may have some stomach upset as a result of the X-Ray therapy. Actually he does not seem to feel too bad. But his appetite remains poor and he persistently runs a slight temperature, for the cause of which the pediatrician refers us to the radiologist, who refers us back to the pediatrician. David is given an antibiotic, which results in brief but sheer panic. I see what looks to me like blood in his bowel movement, rush to telephone Dr Connor, and recall, even before his quick reassurance, that the antibiotic was tinted blood-red!
During the 2 weeks before our departure for California, we have an active social life of which the greatest ordeal is a farewell party given by the Rowes at which most of our friends appear. I should probably have felt hurt had no one thought to give us such a party, but it is painful none-the-less. Joe is assuming a fine position at Stanford and consequently, we receive many justified felicitations. Our response must, of course, reflect our supposed gratification and happiness, which has been genuine once and will never be again.
Before we leave, we pay 1 last visit to Dr Lewis' office, at which nothing new occurs, except that I realize that I shall never, in my whole life, be able to watch with any equanimity while a doctor places his hand upon a patient's abdomen and starts to press…
Dr Connor has been wonderful to us. He has never tried to underplay the situation—yet he has soothed us. He is, I think, profoundly pious—has told us more than once that things are in the Lord's hands now. While at the hospital, we tell him how nice Dr Allen has been to mention on his Sunday visit that he has just prayed for us. To which Dr Connor's reply is, “Well of course—we all do.”
On August 15th, we fly to California, a mere 2 weeks after our scheduled arrival, though it seems a lifetime. The trip is highly unpleasant, but in a pleasantly normal fashion. David is very comfortable and sleeps a lot. Joshie cries almost incessantly for the first few hours and sleeps not at all. When he grows up, we mean to tell him that because of him we accomplished the feat of walking most of the way from Washington, DC to San Francisco, California!
After a week or so of motel life, we move into our rented house. In the interval, I become accustomed to explaining to strangers, “Yes David and Joshua are twins, even though David is smaller; he does not weigh as much less than Joshie as he looks—yes, he is pale because he has been ill recently, but he is doing fine now.” David is, in fact, not altogether well. I notice that he has some discomfort after each meal and has to be carried and comforted for about half an hour at these times. The day after our arrival, we arrange to see Dr Walker at the Palo Alto Clinic. We choose him on the recommendation of Joe's colleague Phil Neal and his wife Laurie—they have 3 children of their own.
We tell Dr Walker David's whole history. His stomach discomfort, we are reassured is because of his x-ray therapy and will disappear eventually. He now weighs around 18 lb. We arrange to bring him to the clinic for monthly checkups. In addition, he is to have x-rays taken of his chest and abdomen to watch for recurrence of the tumor. We are gradually ceasing to talk and even think in terms of “cancer” (except when we wish to be startling). Doctors do not use the term, which is almost meaningless to them. There are benign tumors and there are malignant tumors. The course of illness varies so much among different malignancies that some may bear more resemblance to certain benign tumors than to fellow malignancies. A Wilms tumor is about as malignant as they come. As far as we can gather, this means 2 things: 1, that recurrence is highly likely and 2, that, given recurrence, the outcome is almost invariably death.
Palo Alto has a tumor board at which all cases are registered. Dr Walker asks permission to discuss David's case at its next meeting. We readily agree, but request that he be uncommunicative in reply to possible nonmedical questioners (Palo Alto is a small community, Stanford University an even smaller one. Nearly all the Stanford Law School faculty and students use the Clinic, as there is a special arrangement of prepaid care. Above all, Dr Walker is a great favorite among the young parents who are to become our friends).
In parting, Dr Walker says, “Well, as you know, the prognosis is questionable.” For some reason, this simple statement, by no means news to us, reduces me to tears, somewhat to Dr Walker' consternation. We assure him that my outburst is not because of tactlessness on his part, and that we most certainly always want to be specifically informed and wish no words to be minced and nothing to be kept secret from us.
I might say at this point that throughout David's illness it has been a great comfort to us to know that we should always be told the worst and the best. All the doctors with whom we had contact were wonderful about this. Our questions were never evaded, but answered as fully as we desired. This saved us unnecessary worry and, in addition, removed some of the nameless dread with which I, at least, had always viewed “cancer.” With greater familiarity came not contempt, but at least acceptance of something tangible about which we were doing everything humanly and medically possible. Senseless dread was replaced by well-founded fear.
We all settle down gradually, getting used to our new environment. We rave about the climate. Having come straight from a Washington DC August furnace to cool, cloudy mornings, warm, sunny afternoons, and mellow nights, we are somewhat amused and delighted to hear the habitués (I use the word advisedly, for it seems to us that California is no one's birthplace at all) complaining bitterly and then hastening to reassure us newcomers that, after all, August is the worst month of the whole year! We learn that there is no rain at all from about May through November, so that it is possible to make picnic dates months ahead of time. The rainy season, from November to May, boasts of no more rainy days than does New England all year round. And in between rain, the skies are blue and sunny, like a brisk New England fall day.
So I can indulge in turning the boys loose in our precious fenced-in yard, where they play better by themselves and with each other than ever before. David is quite well—acting very normal. In fact, he is so normal that he eats garden dirt constantly and once almost chokes on a snail shell. He regains his lost weight in about a month.
We begin to have some kind of social life, though Joe is working extremely hard. He enjoys teaching tremendously and gets immense satisfaction from personal contact with students. Most of the faculty calls on us to make us feel at home. Once a month, the faculty wives have a luncheon filled with good food and fellowship and fine tidbits of gossip. We get used to leaving the boys with daytime babysitters, and they apparently give the sitters little trouble—much to my astonishment. We discover San Francisco—less than an hour's drive from Palo Alto—though we are too exhausted to undertake the double trip very often. We have many old friends in San Francisco and visit them, and eat at a fair selection of restaurants. I get literally “punch-drunk” for the first time in my life on an innocuous tasting gin-and-fruit concoction.
But I find that I shun contact with our neighbors. I continue to shrink from questions relating to the relative size and weight of the boys. Whereas formerly I was delighted at anyone's being surprised that they are twins, I am now saddened though unastonished at the disbelief with which my twin-announcement is frequently greeted.
I busy myself with housekeeping—not generally my forte at all. I have a rigid schedule for cleaning—1 room each day during the boys' morning nap. Cooking, washing, and cleaning—these are the activities that give my mind the most peace. Visiting friends, going to parties, and the movies, those are the times when gnawing anxiety never leaves me. At night, before going to sleep, and in the early morning, a hundred times I tell myself not to anticipate, that I do no good by worrying, that the worst may never happen, and that if David's tumor does recur, reality will so far outstrip my wildest imaginings that I might as well not think about it beforehand. Perhaps right now—today, yesterday, and tomorrow—are the best days we shall ever have with David. Let me enjoy them to the full. Some of these thoughts Joe and I discuss together. He is an unfailing source of strength, but, though we agree in theory, in practice all of his and my own admonitions to myself do not suffice to improve my frame of mind for more than a few hours at a time.
As the day of David's first x-ray survey approaches, Joe and I become visibly more strained. Desperately we try to live in the present only and force ourselves to keep up our social activities. David has a bad stomach upset, with vomiting and pain. In trepidation, I ask Dr Taylor, who is replacing Dr Walker during the latter's vacation, whether there is any connection with the tumor. “It is possible—we just don't know” is his reply. Thus, we are helpless to do anything but wait—and this we do ungraciously. But the stomach upset clears up and David is well again.
On the appointed day, Joe takes breakfast-less (on doctors' orders) David to the clinic, whereas I stay home with Joshie. When he returns, after several hours, it is only to tell me that a series of pictures were taken at intervals, and that we should know the results next morning. Somehow, the day wears itself out and the night passes.
Next morning, Joe goes to work as usual and I go about my household chores as usual, in an effort to cling to normalcy. Somehow I cannot conceive of all those pictures not showing up something bad. On the other hand, I cannot really believe that the nightmare will engulf us again.
It is Wednesday. Ironing away while the boys are asleep, I have little arguments with myself: if the news is good, the call should come early, shouldn't it? Dr Walker is usually in his office by 9 and if there have to be no consultations with other doctors, he'll call me immediately. But it's 10-o'clock and he hasn't telephoned yet. On the other hand, if the news is bad, surely the radiology department will call him promptly and he will feel obliged to notify me immediately. See-saw, Marjory Daw… The phone rings. I sit down before I lift the receiver. “Mrs Goldstein? Dr Walker speaking—the X-Rays are negative.” “What does that mean—everything is OK?” “Yes, everything's OK.” Relief sweeps over me, and my hand trembles so that I can hardly lift the receiver again to call Joe with the news.
For a few days, we are more truly carefree than at any time since the onset of David's sickness. This is really our first valid indication, we think, that the operation may have been successful. On a less tangible level too, here is evidence that x-ray pictures can have negative results. We vow henceforth not to worry beforehand, but to await the doctor's report with equanimity. We vow to relax and be less tense, both for the children's sake and for our own. Finally, and in contradiction to all of the above, I tell myself that we now have 3 months without excitement ahead of us, so, let us eat and drink and be merry….
I do not recall how long our exuberance lasts. I do recall that the very next day, I accidentally leave the side of David's crib down and return to the room just in time to see him turn a somersault in the air before landing on the floor with a thud (psychiatrists could have an interesting time with this “accident”). David suffers no ill effects, and we settle into routine.
Gradually, the old underlying nagging returns, but we have grown to accept it, more or less ignore it, and only hope that, as we cannot overcome it, it will remain with us for a good long time in its present form.
Joshie and David have never developed at precisely the same pace; they have alternated in who did new things first. Joshie sat first, David stood first, and they started to crawl within a day of each other. Now they seem ready to take their first independent steps. Joshie is first. He takes a step 1 day, 2 the next, and on the third day he has learned to walk and run without any in-between toddling stage. David soon thereafter takes his first step. Nothing more. We wait, No further attempts. We figure that he has probably become discouraged by Joshie's sudden rapid progress and has given up trying for the time being. We do not worry about his lack of progress.
The boys are working on teeth again and are a little fussy. Their 4 molars and 4 eyeteeth are to come at this point, and we rub paregoric on Joshie's gums by the bottle. We do the same for David, but it does not seem to alleviate his fussiness.
Winter has begun, and the boys have colds, which necessitate a few dreary days of remaining indoors. They go to Dr Walker for their check-ups—Joshie is scheduled for every 3 months and David for each month. They have both been gaining weight, not rapidly, but this is quite normal for the second year of life.
They both dislike having their diapers changed now, and make it quite difficult for us. Joshie kicks more than he cries and David cries more than he kicks. One night, getting David ready for bed, I impatiently yank at his legs, straightening them and saying to Joe, “It can't possibly hurt him to have his legs straightened.” This action and these words of mine I shall never forget, nor quite forgive myself for. David utters such a sharp cry that we are frightened, thinking he may have dislocated something. We put him on the floor and he crawls and stands up as usual, so we forget about the incident.
David's nights are quite restless. He awakens, crying, several times during the early part of each night. Both he and Joshie have seldom slept through the night, waking occasionally, but always going back to sleep rapidly after having been given paregoric, or a drink of water, or just being held for a few seconds. As David sleeps soundly after midnight, we figure that he is probably teething and easily disturbed by our movements in the house. The only odd thing is that he does not go back to sleep as easily as formerly, and, above all, continues to cry, even while we hold him. However, children are always changing their ways, and we do not worry unduly about this new development. Once in a while, all the other efforts having failed, we even let him cry himself to sleep, a nerve-racking procedure to which I am more immune than Joe, but which neither of us can tolerate for more than 10 minutes. By then, David is either asleep, or we begin our ministrating efforts all over again.
We shop feverishly for Chanukah presents that year. We buy rocking horses and other toys. I, for one, am quite conscious of wanting to crowd as many experiences into David's life as rapidly as possible. The horses are a tremendous success. Joshie is not nearly as persistent as David, who rocks gleefully for half an hour at a time, several times each day. However fussy he may be upon waking, the horse puts him in excellent humor, which greatly reassures us.
Early in January, Joe's parents come for a visit. We are very pleased to have them with us, but there is considerable strain. Viewed through other eyes, David's fussiness seems more disturbing. We notice, too, that he hardly, if ever, lets go of his favorite blanket now, whereas formerly, he has ignored it except when sleepy or upset. Instead of playing when we put him on the floor in the morning, he tends to wail for a while and then sit or lie down with his blanket, sucking his thumb. He does not enjoy car rides, and cries after the first few minutes. Often we return from a projected drive because David seems so unhappy. His appetite is poorer than in the past, but erratic. Sometimes he consumes an enormous meal, but he evidently hates sitting in his feeding chair now and we hold him on our laps more and more frequently during mealtimes. Once again, we don't worry too much, because Joshie has been existing on little more than milk and bread for months, and seems to thrive on this diet.
In retrospect, it may seem that we, as parents, must have been totally blind and deaf not to connect David's behavior with the tumor. But it must be remembered that his fussing is merely an extension of what is fairly normal for young babies, and he is only 18 months old now, so that there has been no abrupt transition to evident ill-being, but rather a failure to develop well-being, which is much harder to recognize.
One day, David has stood up by his feeding table to get a cracker, and then starts to wail. Joe's father says, “Help him to sit down; he can't do it alone.” Rather impatiently, and smiling at the overconcern of grandparents who do not know what a child is or is not capable of doing himself, I say “He has always sat down by himself before; I don't see why he can't do so now.” But David continues to wail, and finally I help him to sit down. From that time on, I watch with more awareness, and to my perturbation I realize that each day, David becomes a little less physically active than the day before. Soon I count the number of times that he has stood up each day, and report it to Joe in the evening. One day, he climbs on to the coffee table a few times, and I report this gleefully. But he does not do it again, unlike Joshie, who, having once mastered this feat, seems to regard the coffee table as his natural habitat—until he tires of the sport.
One morning, while Joe's parents are still with us, Joe points out to me a protuberance on David's back. I'm fairly certain that this is merely part of the backbone, a little more prominent than other sections. Nevertheless, we rush to Dr Walker's office, telling Joe's parents that we have gone to let him rub David's tooth through the gum to alleviate his distress.
Dr Walker reassures us that what we feel is indeed a normal part of the backbone. We talk over our other observations, telling him how active David is on his horse. Dr Walker's (unforgettable) comment, “It's all so ethereal, isn't it?” He watches David crawl, which he does expertly and rapidly, and sends us home somewhat more at ease.
Later in January, David has his next x-ray survey. Once again, we wait in trepidation and trembling. Once again, the result is negative. Once again, we rejoice in carefree abandon, ignoring David's fussiness. It is Friday, and that evening we have festive Sabbath candles on the table. I feel truly thankful to God, lacking my usual self-pity. Before Joe goes out for our weekly shopping, I remember saying to him, “Joe, bring me home a present today; I want to celebrate. After all, we know that, as of this moment at least, our David does not have cancer.” I have often thought of this statement as my “famous last words.”
David's check-up takes place the following Monday. He has lost about a pound in weight. Dr Walker examines his legs carefully. Joe and I disagree as to which leg is the weaker. Ominously, Dr Walker says, “These muscles aren't right. The response is too flabby. And at his age he should be acting more like…” looking around, his eyes fall on Joshie, running around the office busily, opening drawers, and peering inside cabinets “well…this!” Hesitantly, I venture “muscular dystrophy perhaps?” He replies that offhand it does not look like it. “Let's let it go for a while. Come back in 2 weeks, and if there is no improvement I'll have some other doctors look at him.”
The days that follow are filled with apprehension. It so happens that we have more social engagements than usual. All of them I remember vividly for their unreal, nightmarish quality. It is as though we were living—perhaps existing is a better word—in 2 different, irreconcilable worlds. One is filled with ordinary people and their every-day problems and joys, with talk about recipes, gossip, and plans for Easter egg hunts. The other is a gray world of stark fear.
The 2 weeks are over and we see Dr Walker again. David's appetite has been poor in the interim, and I am not surprised to find that he has lost more weight. It is arranged that we see a neurologist in the clinic. Dr Silverman pulls David's legs here and there and scratches him with safety pins to test for sensation. He apologizes to us for the pain he is inflicting. In truth I, for one, pay very little attention to such minor distress for David by now. Thus far, I have regressed from the average young mother who blanches when her baby receives its immunization shots.
Dr Silverman finds nothing neurologically amiss and suggests that David's symptoms may be owing to a recurrence of his Wilms tumor. This is the first time the possibility has been named out loud. I find myself quite relieved, because in my own mind I am quite convinced, I think, that the tumor has nothing to do with it. Has not Dr Humphrey told us that recurrence, if any, would be in the lungs? And was not David x-rayed but 2 weeks ago when his present symptoms were already rampant? The x-rays are taken that same evening. The night is troubled as before. Joe goes to work next morning, as before. The phone rings earlier than before. Dr Walker's voice speaks, “There are metastases in the right knee and left hip bone.” “What does that mean—that the tumor has recurred?” “Yes, I'm afraid so.” “Thank you doctor, good bye.”
In a trance, tearless, I call Joe. While awaiting his return home, I put the boys on their rocking horses and, calmly, I watch them both riding vigorously. I cannot look at David for long, however. I am afraid that my eyes will tell him as plainly as though I was shouting out loud, “You are dying! You are dying!”
THE SECOND ADJUSTMENT
We frantically try to get a babysitter so that we may go to see Dr Walker without the boys. We hate to talk about David's illness in front of them, but sometimes it is unavoidable, and sometimes I do it anyway, because at a given moment I may feel a powerful urge to talk. Today, we can get none of our regular sitters and we do not feel this is a good time to try out a stranger. So the 4 of us drive to the clinic, resolved to keep our voices normal and our feelings in tight check. We are quite successful.
Dr Walker says, “Neither you nor I can be surprised at these 2 metastases.” I find this statement rather strange as, unlike Dr Silverman the neurologist, Dr Walker has at no time, in talking to us, connected David's symptoms with the tumor. I remember his statement of not so long ago, “It's all so ethereal, isn't it”? No use saying anything about that though. We ask the meaning of the term metastasis. We wish to be able to visualize what is going on in David's little body. As far as we can gather, it means an eating away of normal tissue, rather than additional growth, as I had always supposed. We ask, “What is to be done now?” “What about amputation,” Joe wants to know. “You can't remove the whole hipbone, even if it were to do any good.” I say, “I suppose there is no use giving him more x-ray, since he's already had some?” Dr Walker seems of the same opinion, but at our request tells us there is a cancer specialist in San Francisco, Dr Trapp, and puts us in touch with him. We probe further, “What more is to be done?” “Give him aspirin at night to help him sleep. Later on we'll arrange for terminal care in hospital.” Even at this moment of initial shock, while I am relieved that David is not to undergo amputation or other painful treatment, I am vaguely disappointed in Dr Walker's negative attitude. And on subsequent reflection, Joe and I feel this more keenly. Although we may yield to despair, surely a doctor should think of something to do till the very end! (Later in Boston, we are delighted to find the atmosphere completely different. When David is admitted to hospital there for the first time, I ask Dr Kahn, “Is this likely to be terminal care?” and am heartened to be told, “That is a term we never use here. The patient is always admitted for treatment.”)
Though Dr Walker has always been very kind and competent, we shall never feel our old confidence in him, though perhaps our response is unreasonably emotional.
We drive to San Francisco to see Dr Trapp. He is a very calm man, yet sympathetic. In his waiting room, I look around at the people. “Are they equally doomed?” I wonder. “And what must they think about us, coming in with 2 young babies.” “They must surely guess that it is one of the children who is afflicted, and feel sorry for us!”
Dr Trapp talks with us at length. For the first time, we hear a new word—“chemotherapy.” He says that in Boston, Massachusetts, experiments are going forward with this form of treatment, with some success. There is one drug that he can use, though it has never been successfully employed against a Wilms tumor. It is not too toxic and may be worth trying. It is some kind of mustard derivative. He receives special shipments of it from the East, as it is not yet being manufactured on the West coast.
We ply Dr Trapp with questions. He confirms Dr Walker's prognosis. There seems to be no hope of cure. David's death is only a matter of time. How much time? Are his days numbered in years, in months, or what? And for the first time, we are given a tentative terminal date: “A very few months at the most.” It is now January. I speculate, “It will all be over by summer.”
Dr Trapp, Dr Walker, and Dr Jones, the clinic's radiologist, after consulting with our friend Dr Humphrey in Washington, DC, agree to try x-ray therapy after all. With this decision, plus administering the medicine, we begin to recover our spirits somewhat. There is nothing worse, we find, than to do absolutely nothing. However hopeless the situation, we want the medical profession to keep trying and trying. What is there to lose? Why rule out a miracle? Surely a cure will eventually be found, and there must always be a first time. Why not David? So we grind the pills carefully, and scrape up each last drop of the milk to which we add them. And we take David to the clinic each day for his x-ray treatments. After a week, the first pictures show some improvement—some recalcification of the bone. We are warned that, of course, this is purely temporary, but at least the tumor is proven radiosensitive and the therapy is continued. After a while, David even stops screaming throughout the entire treatment and lies passively sucking his thumb and holding on to his faded blue blanket. Joshie loves these daily outings. He has more freedom than at home for, while Joe is with David, I let Joshie run through the whole clinic, and he leads me a merry chase, incidentally learning to climb stairs in the process.
The only vaguely encouraging medical statement that I can remember from this time is Dr Jones's, “I have seen x-ray benefit children a great deal sicker than David.” And, in blissful ignorance of the days to come, I wonder, “Is it possible to be sicker than David is now and still live?”
Actually, David is improving. He has never been very bad during the day, and now he is beginning to sleep better at night. The day comes when he stands up—something that we had thought never to see again.
We do not go out at all in the evenings for a few months—wrongly I now believe—and have company only once. My chief pastimes are overeating and reading women's magazines. We also acquire a television set, which affords us some distraction in the evenings. We still tell no one about David's condition and duck every time we see a familiar face in the clinic. The only exceptions are Joe's Dean at Stanford law school, whom he feels duty-bound to inform, and the Neals, whom we tell because Phil Neal keeps asking Joe why he is so sad.
We take the boys out as much as possible. We want to give David all possible experiences. When it comes to deciding whether to buy a certain toy or to wait until the boys are bigger, there is obviously only one answer—get it now. Every other week, we see Dr Trapp in San Francisco. He does not examine David; merely checks his blood count and talks with us. We tell him David is a different boy, eating better and enjoying himself more too. He seems pleased to hear this, but gives us no long-term encouragement. Despite this, hope tends surreptitiously to creep into our hearts again, though we vigorously strive merely to enjoy each good day and not to have false dreams of the future. Once we take the boys to the San Francisco zoo. We have only 50 minutes to spare before having to rush back to Palo Alto for another appointment, but we have never regretted going! The boys' delight is wonderful. Joshie is noisier in expressing his approval, but David's enjoyment, while quieter, seems just as profound.
All in all, we feel that we have adjusted quite well, even though on a new, low level. Joe works, and we get through the days fairly evenly and calmly, with occasional lapses. For a while, at least, we no longer worry. When David coughs, we wonder calmly whether it is a cold or a tumor in throat. It turns out to be a mere cold. I become less concerned about David's eating. Yet, I unreasonably feel happy whenever he eats a large meal. I learn to accept this irrationality—this ambivalent resignation and insidious, latent hope.
Early in April, another complete x-ray survey is taken. This time, we are comparatively calm. Not for the first, and certainly far from the last time, we assure each other that we have mourned David twice already and are determined to mourn him but once more.
Dr Jones, the radiologist, telephones and tells me a lesion has appeared in the right lung. And once again, our slim thread of hope exposed and destroyed simultaneously, we are plunged into turmoil. Inaction being worse than anything else, we anxiously await our next visit to Dr Trapp. In the interim, as I have done at times ever since recurrence first took place, I sometimes wish David would go to sleep one night and not wake up next morning.
We have a long talk with Dr Trapp, during which he mentions once again Dr Farber and Children's Hospital in Boston, Massachusetts. Boston has a multimillion-volt x-ray machine, which, Dr Trapp thinks, might be more effective for therapy to the lung than the regular machine. He mentions the case of a little girl whose Wilms tumor, having spread to the lung was thus treated a year or so ago, and who is alive and doing well. We pounce on this information avidly and press for further details. It transpires that a similar machine is being built at Berkley, California, but Dr Trapp is not certain whether it is completed. He promises to find out.
On the way home to Palo Alto, we mull over the idea of going to Boston. We decide that I shall go alone with David, have my mother come to California to look after Joshie, and have Joe continue to work. We calculate I should not be gone more than a month or so, which, judging by our past experiences, is the average duration of an x-ray course for David. I am not displeased by the prospect of a trip, as I welcome any positive action, and even positive discomfort, to distract the monotonous groove of my death thoughts about David. Also, Joe's sister Mimi and herfamily live in Boston and his father lives in nearby Springfield, Massachusetts, so I would not be totally alone.
A few days later, we hear from Dr Trapp. The Berkely machine is not yet completed. But, having spoken to Dr Jones and other radiologists, he thinks that with a child of David's age and size, the regular machine is just as efficient, as there is not much body to penetrate before reaching the lung. Anyway the prospect of lasting benefit is dim.
We are not so easily discouraged, however, having once glimpsed what we think is a new avenue of treatment. We telephone Dr Farber in Boston. He confirms Dr Trapp's views, but mentions that he and his colleagues are experimenting with chemotherapy, using drugs that he does not send outside Boston. He refuses to give us any encouragement whatsoever, but agrees to accept David as a patient should we decide to bring him.
After some heart-searching—but not really too much—we decide on the trip. We tell ourselves that we will look on it as a consultation and shall not be disappointed if we are sent back in a week or so.
A few days later, David and I are on a plane to Boston. It is the end of April. We plan tentatively that Joe and Joshie will join us in a month or so, at the end of the school term, should David (as we truly hope) still be treated in Boston.
Things take an unexpected turn, however. Three weeks after my arrival, Joe flies to Boston because he suddenly needs a major operation. The night after his operation I have a miscarriage. Then we gradually settle down in Boston, and in June my mother and Joshie join us. At least we are all together again.
I have at this point digressed and anticipated. I shall now turn back to relive a wholly new chapter in David's little life, and in our experience—a wonderful and tragic, an unspeakably depressing and indescribably hopeful chapter, a totally new and separate world—the Jimmy Fund Clinic in Boston, Massachusetts.
THE JIMMY FUND INSTITUTE
Almost as soon as David and I get off the plane in Boston after a remarkably easy trip, we go to Children's Hospital. For the first time we hear the words “Jimmy Fund Clinic.” As we find out later, the Jimmy Fund was established originally to aid a little boy suffering from leukemia. It expanded into a complete children's cancer institute, comprising many floors of laboratories and the outpatient Clinic. Though part of the Boston Children's Medical center, it is separately endowed and is now supported by the Variety Artists and the Boston Red Sox. It is the only institute in the whole country devoted entirely to children suffering from all kinds of cancer, of which leukemia is the most common variant.
We enter the Jimmy Fund Clinic waiting room for the first time at 3-o'clock in the afternoon. Clinic hours being in the morning, it is bare, save for the receptionist, Mrs Rollins, a kindly and unobnoxiously cheerful lady. I am astonished at the loving care and lavishness with which the clinic is equipped. The large waiting room is dominated by a giant merry-go-round in the center and a huge Lionel electric train along 1 side. The train is set in a stone mountain and boasts of an enormous tunnel, a station, and, above all, a whistle. As I find out later on subsequent visits, the patients delight in constantly switching the train on and off and blowing the whistle. The resulting din is deafening, but nobody seems to mind. In fact, one of Mrs Rollin's repeated tasks is to settle the train back into its track, from which it has an unfortunate tendency to slip. I go into all this detail about the train as an illustration of the whole Jimmy Fund Clinic atmosphere. Staff and equipment work hand-in-hand to make everything exceedingly pleasant for the child patients. There is also a television set, a doll's house big enough for the children to climb into and peer through the window, and in yet another corner of the room, the exposed interior of a doll's house with complete furnishings. Scattered through this and the smaller waiting room are chests and boxes full of toys—cars, trucks, dolls, hundreds of books, 3 rocking horses, and 2 bicycles. The whole clinic, including the examining rooms, is gaily decorated with the stories of Pinocchio, Snow White, and other favorite tales. Even the clock has a Mickey Mouse face.
Mrs Rollins asks us the usual questions about age, address, name of referring doctors, and so on, and then David is shown to the little x-ray room, where a complete set of pictures is taken. That concludes our first visit and we return to the Commander Hotel in Cambridge where Joe's father has rented an efficiency apartment for us.
David settles in astonishingly well. He eats, plays, and sleeps and seems generally content. He gives no visible evidence of missing either his father or his brother. This delights me especially as, since his operation, David has shown a tremendous attachment to Joe, evidencing a noisy unwillingness to be tended by me whenever Joe is available.
The following morning we have our first appointment with Dr Sidney Farber, the head of the Jimmy Fund institute. In contrast to the previous afternoon, the Clinic is bustling. Children are careening up and down the corridor on bicycles, the train is whistling, and the merry-go-round is in full swing. I look around sadly. I am as yet (and remain for some weeks) unaware of the fact that the children are all victims of some form of cancer, and I think, “Surely none of these children are as badly off as poor David.” As a result, I do not for some time talk to the other parents, and feel rather isolated, shrinking from possible questions about David's illness.
Once I discover that almost all the children I see are doomed to die within a few months, I never cease to be astonished by the cheerful atmosphere that generally prevails. True, upon closer examination, the parents' eyes look suspiciously bright with tears shed and unshed. Some of the children's robust looks, I find, are owing to one of the antileukemia drugs that produces a swelling of the body. And there are children with scars, children with horrible swellings on different parts of their bodies, children missing a limb, children with shaven heads, looking pale and wan, clearly as a result of recent surgery, children limping or in wheelchairs, children coughing, and children emaciated.
Yet, there is always laughter and good humor among the children, and among the parents—at the very least an attitude that is calm acceptance rather than stolid resignation. There are exceptions, of course. Some adults discuss symptoms and prognosis in front of children who are, to my mind at least, old enough to understand the conversation. And, for all of us parents there are times of deep and obvious despair and recurrent crises when the disease takes a sudden turn for the worse. Although on some days, the children look amazingly healthy and full of bounce, it seems on other days as though not one of them has energy enough to use the abundant toys.
Dr Farber's office is on the third floor, far removed from the hustle of the clinic. It is a restful place, and he steps from behind his desk to shake hands with Joe's father and me. We have David with us. He welcomes us to Boston and we have an extensive conversation. We discuss the facets of David's sickness and prognosis. His outlook is, if the expression be meaningful, one of relieved pessimism. The institute is searching and searching for clues to the cause and cure of malignant tumors. Although 15 years ago, Dr Farber says, he would scarcely have known what to do with large sums of money, so few were the opened avenues of research, the situation has changed radically. Now, numerous possibilities are being explored simultaneously. Greatest progress has been made with leukemia, where remissions (temporary arresting of the disease) are now obtained with fair regularity. David's—the “hard” type of malignant tumor—is being bombarded with chemicals so powerful that they could melt away the tumor easily. But the drugs destroy healthy and sick tissue, and no way has yet been found to kill the tumor without killing the patient. He reassures us that the utmost care is exercised in the use of these drugs. Because the course is so uncharted, there are many drugs that he does not send out for use outside the Jimmy Fund Clinic. At the clinic itself, the children are under constant and overall medical supervision, and medication is regulated in accordance with toxicity experienced by the children. Furthermore, he disabuses me of any idea I may have had that children are experimented on—for that purpose dogs are used. In other words, he explains, the primary concern of his staff and himself is the welfare of each individual child entrusted to his care and the desire—and need—to find out what reaction certain drugs will produce is not allowed to predominate.
I am not sure whether I am relieved or sorry to hear this. It practically eliminates any vague hope I might have harbored that some unexpected medical miracle might take place as a result of a previously unknown drug being used on David. On the other hand, I am reassured that no unnecessary suffering will be inflicted on David for the sake of future children who are not David. On the whole, I leave Dr Farber's office with my mind more at peace than in many a month, even though I shall compulsively clip newspaper articles about new cancer cures and ask doctors about them (only to be invariably told that such articles are unreliable and meaningless). For now I know that I have come to the 1 place in the world where a well-qualified staff is pressing full speed ahead to help David. I sense an undercurrent of excitement, a feeling (persistent despite repeated frustrations) of being on the verge of discovery, which makes me almost hopeful. I shall always know that we did the right thing in coming to Boston. Not only are the facilities for living greater here, but also perhaps, more important in David's case, the facilities for dying are unparalleled. There is no emphasis on aspirin here! I discuss the question of pain alleviation at some length with Dr Farber, for it is realistically uppermost in my mind, as against the chimera of recovery. And I know now that David's suffering will be minimized as far as humanly possible. I cease to question myself whether we are not being selfish in trying to prolong David's life, thereby causing him more suffering. In the first place, if treatment has any effect at all, it will also alleviate pain caused by the tumor. In the second place, when Joe and I, at a later visit to Dr Farber's office, raise the question of infanticide with him, he quickly and thoroughly convinces us that a doctor's job is to prolong life as long as possible. Should he ever lose sight of this one clear goal, he is no longer a doctor to be trusted. Having assimilated this idea helps us a great deal subsequently when David is often acutely uncomfortable (though rarely, if ever, in real pain) as the result of medication.
Our visits to the clinic soon follow a fairly definite pattern. It has been decided to give David x-ray therapy to the lung in addition to chemotherapy. The drug he receives goes by the name of J.F.3, which we interpret to stand for Jimmy Fund No. 3. It is apparently one of the very few drugs used with any hope of success against a Wilms tumor, and, in one form or another, with but few interruptions, David continues to receive it for the rest of his life.
Because of the potentially toxic effects of these combined treatments, David is examined and his blood count is taken daily. This means that we spend about an hour at the Clinic each morning, and, after a while, David climbs off my lap and crawls around the waiting room merrily in search of adventure and amusement. He does not walk alone, but is able to do everything just short of that, and gets about with great speed on all fours, like any healthy baby. He submits to his various experiences like a veteran. He lies silently sucking his thumb throughout his 7-minute x-ray therapy. I am not allowed in the room with him during this time. He does not cry when his finger is stuck for the daily blood count. In fact, to everyone's delighted surprise, he tends to get annoyed when the laboratory technician calls another child out of the waiting room instead of David. He holds out one finger accusingly, and I reassure him that his turn will come soon.
I often recall his screaming through every blood count in Palo Alto, and muse sadly how one's perspective changes. At that time this was his greatest ordeal, and, earlier yet, our greatest trepidation was bestowed on immunization shots. Now we consider everything a minor annoyance at most. What do discomfort, and even some pain, matter when there is a chance of prolonging life?
After the blood count, one of the doctors examines David. No child has his own doctor, so we soon get to know all the doctors. Their personalities and techniques of handling the children differ immensely. Our favorite is Doctor Strauss, with his kind, sad, face, and gentle hands; we anticipate with great regret his imminent departure for private practice. Dr Kahn, graying, boyish crew cut over a young face, is more abrupt and gruff, but I find him very satisfactory to deal with. He minces no words—as one of the other mothers opines, “He'll tell you that you'll be dead tomorrow, if that's what he thinks.” Although neither he nor the other doctors volunteer information, he is most willing to answer questions without evasion. After a while, I think Joe and I are recognized as wanting specific information whenever it is feasible for the lay person to understand, and we are kept better informed than some other parents, who do not know that they may ask questions, and would perhaps not wish to be burdened with the answers anyway. Dr Macy, long-jawed, harshly handsome in a blond, military fashion, is less to my liking. He seems cold and distant and tends to evade my eyes. I note, however, that he is much friendlier to children in the absence of their parents, and that, after all, is what counts. But unlike Dr Strauss, for instance, he does not succeed in humanizing his professional relationship. Dr Tyler, a woman doctor, her unbuttoned white overalls revealing a never-ending variety of neat, pretty dresses, is kind and gentle. Gradually, I begin to feel she is too gentle. She seems personally involved with the children's suffering, and her compassion makes her hands less sure, or so it seems to us. And her hesitation communicates itself to David sometimes, and he is less cooperative with her than with the other doctors. Much later on and greatly to our own surprise, when David receives J.F.3 IV—a difficult and painful procedure because of the tiny size of children's veins, we find ourselves demanding that Dr Macy be the one to give the injection. One, 2, 3, he has found the vein and injected the drug. Others tentatively probe here, fail, probe there, fail, get more and more nervous as David's screaming persists and intensifies, and sometimes have to give up altogether after 15 minutes torture for everyone.
Two interviews make me realize once again that David is part of a huge research program. One doctor questions me minutely as to family medical history—Joe's and mine. Another has a long list of chemicals, such as bleach, floor wax, paint etc about the useof which she questions me. Curiously enough, this list does not include contraceptives. Dr Lock, Dr Farber's youngish–middle-aged second-in command, who combines an air of competence and self-confidence with curiously awkward and boyish physical gestures, later informs us that when the list was compiled there was considerable lay opposition to including contraceptives, and, as the medical authorities felt anyway that there was no connection, it was decided not to make an issue and to leave out questions about contraceptives. I mention this because we were disconcerted to find that there should have been any lay pressure on such a subject.
Dr Lock also tells us that no line of inquiry has produced any results as to the possible cause of malignant tumors. The only fact emerging is that in every respect but the fact of having such a tumor, Jimmy Fund children are the epitome of “normalcy.”
After a few weeks' therapy, David's left lung shows some improvement and the condition of his bones has not begun to deteriorate again. We measure the drops of medicine into his milk as if each were a precious jewel. His appetite is fairly good, and he is feeling generally well and happy. However, x-ray therapy has to be discontinued earlier than originally intended because David's white blood count drops below safety level. Also, the radiologist has been skeptical from the outset. Unlike Dr Humphrey, our radiologist friend from Washington, DC, I find Dr Eastman quite unpleasant on the occasion of our few meetings. He makes no attempt to disguise his view of the hopelessness of David's case as far as he is concerned. Although I am all for honesty between doctor and the parents of child patients, I feel that he overdoes this to the point of unnecessarily depressing me, as if to disabuse me of any illusions, which I do not have anyway. I gradually learn that there is sometimes a difference of opinion between Dr Farber's staff and the radiologists, with the former having to exert considerable pressure to get the latter to agree to x-ray therapy. The only thing I find the Washington and the Boston x-ray departments to have in common atmospherewise is that they both seem to have been relegated to the slum area of their respective hospitals. In Boston, this drabness and discomfort is particularly noticeable in contrast with the brightness of the Jimmy Fund Clinic.
As David is feeling so well, we plan a weekend trip to Springfield, Massachusetts to visit Joe's dad. Before we leave, we chat with Dr Farber again, and for the first time he talks about David's case in terms of “restrained optimism.” We leave his office glowing.
David is not happy in Springfield. He vomits once and develops a cough. We are afraid that this may reflect a growth of his lung tumor. However, several days after our return to Boston, he develops the measles. We are quite amused at the joy of discovery that accompanies this diagnosis at the Clinic. One doctor calls in another, who calls in a nurse, and they point out to each other how hard it is sometimes to diagnose measles, but that David fortunately has a fool-proof symptom—namely, white patches in his mouth (all this while David is already sporting a light but unmistakable rash!). It is quite evident that at the Jimmy Fund, measles are rarer than cancer!
David is quite miserable, needs constant attention, sleeps badly, and does not recover even when the measles are over. He develops a secondary infection in his throat. He is put on antibiotics, which he abhors taking and regurgitates not infrequently. His hemoglobin goes down and he eats virtually nothing. It is an all-day struggle to get even the few ounces of milk containing his J.F.3 into him.
One day at the clinic, he is given an IV feeding via a vein in the head. I am amazed at how calmly Joe and I are able to accept David's having to endure this painful procedure. We are becoming acclimated to the trappings and the suits of our woe. So long as there is no tumor progression, we can take anything with relative calm.
The IV feeding does not perk David up, and the following week he is given a blood transfusion. This is preceded by a sedative, but David remains awake throughout the hour-long transfusion and cries steadily, though more in fear and outrage than in pain. It is only after our return home that the sedative takes effect and he sleeps away the afternoon. The next day, he is a different boy. His energy returns and for the first time in weeks he plays a little. We are delighted and take him to the clinic in high spirits. Then Dr Kahn tells us that David ought to be admitted to the hospital. I am completely taken by surprise. Is this the “terminal care” of which Dr Walker had spoken in Palo Alto?
Dr Kahn tells me in no uncertain terms what he thinks of that expression. David is admitted for treatment. His J.F.3 is to be given IV instead of orally each day and it is felt that this is best carried out at the hospital. Unsuccessfully choking back tears, I ask, “Is it possible that he will never leave the hospital?” Dr Kahn replies that in a case like his one can never tell. The end might come at anytime. “But how,” I ask, “he is not that sick—what will be the symptoms?” “Either the tumor could hemorrhage into the lung or David might have a cerebral hemorrhage. It is impossible to forecast what will happen.”
This is the first time I have been given such an outline and the end has never seemed closer. Yet our main concern of the moment is the mental anguish, which we are sure David will experience in hospital. For the first time in his life he will be completely left alone by his parents, for visiting hours are but from 11 to 8, and I am not permitted to spend the night.
In great agitation of spirit, David, Joe, and I take the brief walk from the Clinic to Division 34—a ward of Children's Hospital devoted entirely to Jimmy Fund patients. Here, we become part of yet another new world.
We enter a large hall decorated with a cardboard train along one wall. Half way down the ward is an authentic-looking stop sign, which can flash green, red, and amber lights. The train's engine can be climbed into and the bell pulled. At the other end of the ward is a life-size gasoline pump, registering amount sold and price. The rooms, each with a television set, house 1 or 2 patients each (with the exception of 1 “ward” containing 4 beds); they lead off both sides of the corridor and most of them have French windows to a balcony. There is also a treatment room, a large kitchen, a utility room, a linen closet, a storage room, a parents' waiting room with lavatory and telephone booth, and a small office for the doctors. Last but not least, a large playroom that contains a television and is lined with shelves and boxes full of toys and books. Such are the physical contours of David's new home. Of course, we do not assimilate all these details immediately. My first impression is one of overweening activity, almost snake pitlike in its intensity. I am overwrought, fighting back sobs, and suddenly overcome by a fantastic sense of deja vu. After a while, I trace this sensation to the presence of a rotund nurse with a kind, smiling face. Shades of nurses' aide Bessie in the Washington, DC hospital! Only this time, the kindly presence proves to be the head nurse, Miss Hanover, who governs the ward with a firm, unhurried, ever-patient hand. Her days off are always an unwelcome interlude so far as I am concerned, even though Miss McDonald, who takes over, is also a good nurse.
Miss Ross, the nurses' aide, comes to take David from me to be weighed. I request her to weigh him with his blanket, to which he now clings all the time, and which is his greatest nonparental comfort. Miss Ross says “No—his weight would then not be accurate.” I plead with her, pointing out that as he can always be weighed with his same blanket, this will make little difference. Miss Ross remains adamant, however, and tells me I must speak to Miss Hanover about it (who is busy at that moment). She then forcibly separates David from his blanket and from me, and carries him away screaming.
For some reason, this trivial incident affects me disproportionately. It seems the straw that breaks the camel's back, the final indignity climaxing an unbearable string of outrages to his normal life, personality, habits, and wishes that David has had to endure in the vain pursuit of health. But I hope and pray that he does not feel about it as I do. Miss Hanover, of course, says that David may be weighed with his blanket in future. David is brought back and I sit with him at a little table in the hall where he contentedly plays with a box of crayons. I never overcome my grudge toward Miss Ross however, and manage to be pleasant to her only because I do not wish her to revenge herself on David during my absence. This fear may sound exaggerated, but there are a thousand ways in which a powerful adult, a nurse, can make a helpless child's hospital life more pleasant or more wretched. The degree of patience demanded of the nurses is enormous and it is only human that they sometimes shout at the children and sometimes ignore their interminable and often fretful requests for considerable lengths of time. On the other hand, I have often seen nurses, including Miss Ross, go out of their way to speak lovingly, hug the children, try to make them smile—in short, do everything to make them feel wanted and at home. This is particularly true of the student nurses whose very inexperience, frightening as it is at times, gives their relationship with the children a certain personal interest and warmth often lacking in the graduate nurses. If the latter sometimes seem callous, I feel that is the only way in which they can keep their sanity without deserting a group of patients such as those in Division 34.
Most of David's first fellow patients make an indelible impression on me. Subsequently and fortunately for me, I become more indifferent later on. I believe that this experience is shared by other parents.
Among my first contacts is Jenny—about 4 years old—with whose crayons David has been playing (I had thought them to be hospital property). Her mother, an attractive, rather excitable woman, explains that Jenny is concerned only because the crayons are a new gift. Ordinarily, she does not care what happens to her toys. Her only attachment is to a toy aluminum teakettle to which she clings, as David does to his blanket. Jenny has leukemia and is currently in hospital because she developed jaundice. Hereyeballs are still yellow. I am to learn that, contrary to what I had supposed, leukemia symptoms are not merely general weakness because of lack of blood. It seems as though, as the disease advances, the whole body begins to disintegrate and be subject to all kinds of aches and pains and tangential afflictions, such as chest colds for instance. The hemorrhaging, so often evidenced by hideous bleeding sores, is of course the most constant visible symptom.
Sitting in a go-cart in the hall is a little girl, who, I think at first, has been given a black eye. I am wrong again. Lucy, a 2-year old, suffers from a form of cancer that spreads to the area behind the eye and causes hemorrhaging there. She is not a very attractive child, and wails almost incessantly that first day. So does Debbie, an angelic-looking 4-year old whose face is white and frowning with suffering. She has the same type of tumor as Lucy—a neuroblastoma—but her eyes do not become affected until several months later.
Alone in a room lies Teddy. It takes many days before I venture inside it, for, skeleton-thin and blinded, Teddy has a monstrosity for a face. His tumor, starting behind the ear, has engulfed one side of his head and obliterated his normal features. He is fed through a tube in the nostril, and is fully conscious. He has existed on the ward, completely bed-ridden, for several months, listens to the radio, and has comic books read to him.
Judy, a cheerful 6-year old, has leukemia, though seeing the mass of bruises on her chest, I had at first suspected she has a lung cancer for which she had recently undergone surgery. However, bruises, evidencing hemorrhaging, soon become for me a familiar leukemia landmark.
Also in a go-cart is Axel, a beautiful blond 3-year old with enormous, expressive blue eyes. He lies on his go-cart. Like most of the children, he wears few clothes, and his abdomen is revealed naked, huge, and ever obtrusive. Unlike Debbie and Chrissie, he is very quiet and uncomplaining most of the time. When he does speak, it is usually to request in his sweet, piping, monotonous voice “ginge-rale” or a blanket or to be put to bed.
The go-carts are a useful device, enabling the children to be wheeled or merely placed in the corridor rather than confined to their rooms. They are equipped with IV poles on which the burettes containing blood or IV feeding are hung. Thus the children are not necessarily confined to their beds even when they require IV medication. To me, one of the most pathetic sights of all that I have seen is the little go-cart, with the little child, leg or arm tightly bandaged to hold needle in vein, and a tall IV pole with its burette. The combined effect is that of a boat with mast but no sail, helplessly drifting alone in a rough, uncharted sea.
Chrissie is another beautiful, blond 2-year old. She too suffers from a neuroblastoma (current outward manifestation: a black eye). She is too weak to get out of bed and vomits all her food. Once again, I notice how unusually attractive so many of the patients are. They tend to look too angelic—as if they already lived in another world. David too has had this look from birth.
Tom is a healthy-looking leukemia patient, incessantly demanding rides in his go-cart.
Doris is a cute, small baby with huge dark eyes and an IV needle in her head. She has a tumor other than leukemia (those are the 2 main categories into which I tend to divide the patients).
David's roommate Ralph also has leukemia. He is hospitalized at least for the second time and is entering his final span of life. He has the bloated looks that is a side effect of one of the antileukemia drugs and is a whiner.
Also in a room to herself is Melanie and outside her door there is, for several days, an iron lung. She has had several operations, followed by several courses of x-ray therapy. The last of these has, unaccountably, paralyzed the lower part of her body, and immobilized her altogether. As a result, her lungs tend to accumulate fluid, and are currently in danger of collapse. Hence, the iron lung is in readiness until this particular danger has passed. There is no certainty that she will recover use of her limbs, though radiologists hope she will. At the same time, and for this I envy her whole-heartedly, about 9 months have elapsed without further tumor recurrence. Despite her sick, sullen face (I do not see her smile for many weeks), I tend to feel that she has the best chance of survival of anyone on Division 34.
These are some of David's first fellow-patients. Soon we all get to know each other—children and parents.
Some parents come each and every day for the full 9-hour visit. Some, living at a distance from Boston and unable to afford constant transportation and babysitters for other children, come every few days. Some, like Jenny's parents, come each evening (Jenny eats only when her mother feeds her. She brings a steak each night). Pattie gets no visitors at all, much to our uncomprehending disgust. Various rumors circulate as to the reason for this neglect—her mother has been told not to visit because Pattie is too upset when she leaves, her mother is sick, etc. I never find out the real reasons. But at any rate, Pattie becomes everyone's special interest, both nurses' and parents', and receives more attention than any other child in the ward. She asks everyone for candy—generally receives it, and seems to subsist entirely on candies and bananas, refusing all other food.
Most of us do what we can to help out other children whose parents are not there. We push go-carts, often 2 at a time. We transmit requests to the nurses, try to comfort them when they are unhappy, and we help to feed them. The feedings are quite a problem. Despite meticortin, an appetite-boosting drug given to most of the children, appetites are poor, in many cases to the point of nonexistence. Often the nurses and aides, hard-pressed for time, set trays before apathetic children, tell them to eat, and then do no more about it. This is unavoidable, perhaps, but none-the-less discouraging. Although I soon learn that good or bad appetites are but byproducts of malignant tumors, and will not influence the outcome of the disease, food does sometimes help to make the patients feel better and more energetic. Realizing the futility of our efforts, we parents yet relish every mouthful our sick children eat and gleefully report what has been consumed to anyone willing to listen. Good meals are one of the daily occurrences from which I at least derive my daily quota of satisfaction. I soon bring David some food from home. There are cooking and refrigeration facilities in the ward of which we avail ourselves freely.
Chrissie's mother, except sporadically, does less for the other children than most. She is staying in Boston on her own; her husband works in New York. Chrissie was operated on a few months previously, and is now on her second trip to the hospital, her tumor having recurred after a very brief interval. He mother tells me that she used to take more interest in Chrissie's fellow-patients when she was first sick, but is now too worn out and discouraged to continue. I am unsympathetic to this attitude. But a few months later, I find myself taking the same position. It seems that not only the physical, but also the emotional effort of becoming involved in yet another doomed life is too great to sustain. I begin to realize that some form of mental withdrawal is essential for both doctors and nurses if they are to be able to perform their work well.
I find it comforting to chat with other parents. We share each other's daily sorrows and joys, and it makes us feel better to see the ups and downs of other children. Debbie, for instance, improves startlingly. Within a week of David's arrival she runs around the ward all day long, chatting and laughing. Chrissie, too, gets out of bed and begins to hold down her food. But Teddy lies in his room day after day without noticeable change for better or worse, though the doctors inform his mother that he is sinking. She has been coming each day for several months, but is now so worn out that she visits only on weekends. When she informs Teddy of her proposed change of schedule, he threatens to kill himself. But the next day, he is outwardly more content than he had been in his mother's presence.
I am often in a position to observe how the patients react to parents' arrival and departure. Lucy cries more than ever during visits and munches doughnuts. Little Axel becomes bright and alert and eats tuna fish sandwiches. Jenny eats steak. Chrissie becomes more demanding of attention and small services and eats “mashed taters.” Mostly the children accept their parents' departure with equanimity—that is once the leave-taking is over. I have seen a screaming child subside instantly when the mother's reluctant back has disappeared down the hall. Seeing the children thus lapse into contentment or apathy—who knows which—I begin to suspect that their crying (as for instance David's the moment he sees me in the morning, though he seemed perfectly content when I peeked in on him unobserved) is a healthy release of frustration. Henceforth, though it is unpleasant for me to have David fuss while I am with him, I worry less than on days when he is passive and undemanding.
In addition to discussing our children, we parents of course delight in gossiping about nurses, doctors, hospital conditions, and in exchanging complaints. Chrissie' mother dislikes Miss Ross as much as I do and humors her for the same reason as I do. She is always telling me of Chrissie's new “Rossism”—a verbal expressionpicked up from the aide. A favorite one is “crazy nipple” referring to the constantly clogging nipples of the hospital nursing bottles (I bring David's own from home). Once in a while we surreptitiously enter the doctors' office, other parents standing guard, and read the daily medical reports on our children. I do not know why we do this, as the medical terminology is often either incomprehensible or misleading to us. Yet the temptation to steal a glance is overwhelming.
As the days pass into weeks, we get a larger picture of the situation in Division 34. Patients go home and patients die. But invariably, the empty bed has a new occupant within a few hours. Among the new arrivals is Ruth. She is a newly diagnosed leukemia patient, a pale 6-year old, blond child. Her parents are obviously well-to-do. The mother and numerous visiting female relatives are exquisitely groomed. I have never seen anyone more distraught and discomposed than Ruth's parents during those first days. They are completely dazed—unable to assimilate what has happened to them. And I think their distress is communicated to Ruth, for she is extremely upset and takes longer than average to settle into hospital routine. Subsequently, Ruth's parents and Joe and I become very friendly and have many talks together. Eventually, they too achieve the modicum of composure common to the rest of us, and proceed to enjoy Ruth's returned good health as she rapidly achieves her first remission.
Stella, a 14-year-old new patient, is prone on her back. She tells one of the parents, “I sprained my back so badly, I can't even stand up.” I never discover her exact condition, but I know it is not, alas, a sprained back.
Two little babies are admitted. One, Betty, with leukemia, is placed in an oxygen tent. The other, Rosie, is covered with sores from head to toe, and despite the broiling heat and humidity of a Boston June, has to lie on a plastic sheet. She improves rapidly, at least as far as visible sores go.
I am discouraged to see Laurie readmitted. She is a lovely 5-year old, blue-eyed, blond, bright and alert. I had always noticed her at the Clinic, because she showed such phenomenal improvement from wan apathy to pink-cheeked playfulness. She is in a wheelchair, having had many neuroblastoma metastases, one of which hit her leg. Her mother dresses her beautifully, in pastel-colored clothes, nurses' uniforms, etc. Both mother and child epitomize well cared for daintiness. On 1 occasion, I had overheard Dr Tyler remarking how pleased she was with Laurie's progress, to which her mother retorted, “One can't help being hopeful again, can one?” Apparently, Laurie had suffered much pain and was now free from it, and her tumors had shrunk in size. So, I am very sorry (despite some earlier incipient jealousy on my part) to see her enter the hospital, even though she looks well and remains only a few days for another course of IV chemotherapy.
David has a succession of roommates. Ralph goes home in a day or so. He is followed by Louis, a freshly diagnosed leukemia boy, 5-years old and only recently freed from a leg cast designed to correct a congenital bone deformity. His parents, Southerners, have never previously been so far north, and suffer from loneliness in addition to their other, overriding woes. They seem utterly devoted to Louis, and despite their obvious distress, are already expert at always presenting a cheerful face to him. Their philosophy, which I now tend to share, is never to give up hope—what would be the point of that after all, other than to spoil what good days remain?
As I have said, the turnover among leukemia patients tends to be rapid, and Louis is succeeded by a little girl from Chicago, similarly afflicted, who is also discharged within a few days. Then comes Gracie, hideously bulging with a festering tumor behind her ear. She can eat only baby food and utters whimpering sounds intelligible only to her parents. The latter look emaciated. I learn that at home, Gracie never slept any more. However, she is quite content in the hospital, sucks her bottle incessantly, and cries very little. Callously, I find her an unpleasant roommate for David, because I cannot bear to look at her tumor. Also, her ear steadily exudes a sickly odor. I notice, however, that the children seem to be unaware of and certainly are not repelled by each other's symptoms.
About 10 days after David's admission, death enters Division 34. The first to go is baby Betty. One morning, the oxygen tent and its inhabitant have disappeared. Her end is not unexpected. Most leukemia cases seem to follow a fairly predictable, though individual course. When all possible drugs have been exhausted (they cannot be repeated successfully once they have outlived their original effectiveness), death can be held at bay for short periods of time only by incessant blood transfusions. The next to go is Joan—leukemia—in hospital only a few days. Her mother, momentarily expecting the end, says to me, “I don't envy any of you—you still have it all to endure.” I half agree with her, but not for very long. Joan has been sick over a year, but it is only in the last month or so that her parents have begun to feel that death might be a release. The next to die is long-suffering Teddy. One morning, his bed is empty. Then Axel, one of my favorites, hemorrhages through the mouth. His parents, who have hitherto visited him about twice a week, now commence a red-eyed, 24-hour vigil, having been informed that he would probably die within 48 hours. But he lingers for several days more. His bed (in the same room as Joan's), watched over by special nurses in constant attendance, is almost obscured by IV burettes and bandages. He remains alert to the end, and ever so often, as I pass the door, I hear his sweet, piping voice asking for “ginge-rale.”
Death assumes shape, form, and routine. From the deaths that occur during visiting hours, I observe the pattern. Parents emerge from their child's room, as they have perhaps done periodically for days for short rests. But, perhaps for the first time in days, they are weeping. A nurse takes them to the doctors' small office; the doctor comes in and shuts the door behind him. Later, a nurse brings coffee. Still later, she hands the parents a large brown paper bag, containing odds and ends of belongings. Then the nurse asks the rest of us (quite unobtrusively) not to walk up and down the corridor for a while. A few minutes later, back at our promenade, we note another empty bed. Finish.
Cheryl is admitted to hospital, panting for breath, and is placed in an oxygen tent from which she emerges for short rides. She becomes very attached to Ruth's father, Bill, and I often hear her breathless voice calling his name. Two mornings after her arrival her bed is empty. She is dead. I am surprised because I overheard Dr Tyler saying to Cheryl's mother, “I have seen x-ray work miracles in cases much worse than Cheryl's! Cheryl's death is a landmark for me.” For the first time, 1 possible complete course of David's life seems to be charted—Cheryl, too, had a Wilms tumor, which had metastasized to the lungs.
David, in the meantime, has been happy, content, and is eating well. He cries only briefly when we leave at night (we listen outside his room to make sure). Joe and I usually get to the hospital at 11-o'clock. Sometimes, we are there for the daily medical examinations. When this happens, I watch the abdominal examination with trepidation and frequently imagine the doctor has found a new tumor. I ask and he denies this. David is ravenous and drinks orange juice followed by a ground-up steak and onions that I have brought from home. Joe leaves around noon. I play and walk with David. One-o'clock is nap time, constantly interrupted, to my great annoyance, by the nurse making rounds with medicine. I always feel some other time could be found for this, but am forced to recognize how difficult it is to let any hour pass without some kind of hospital routine—medicine, temperature, blood pressure, bath, feeding, and more medicine. David objects fearfully to all kinds of orally administered medication and manages to spit most of it back. Sometimes he even succeeds in throwing up—very annoying when he has just consumed a good meal. The nurse and I try all sorts of devices, tricks, cajolements, and severity. Nothing works. Disguising the meticortin antibiotic (administered to prevent minor infections made likely by low blood counts caused by antitumor chemotherapy) or vitamins in chocolate syrup or orange juice does not help at all. In the end we must resort to force. My absence or presence makes no difference. I am glad that the important antitumor J.F.3 is not given by mouth currently, as I should have little confidence in David's getting it regularly under those circumstances.
During David's 1-hour nap, I sit near his door and eat my lunch and read. The hospital symptom he has developed is unwillingness to let me out of his sight when he is awake, so I try to be on hand as soon as he wakes up.
The afternoons are long. David is quite demanding. I play with him and carry him around. I let him sit on a bicycle and push him and he also walks holding on to my hands. We pump the gasoline tank and he sits on the train's engine and rings the bell. Among his favorite toys are crayons, which he pushes in and out of boxes. Each time he sees a doctor in a white coat, much to my surprise and delight he calls “Hi! Hi!” until he gets a reply—and then starts all over again. When the nurses' phone rings, he cocks his head and sings out “coh-caw,” his language for “phone call.” He crawls up and down the long hall, getting gloriously dirty. On one of these expeditions, we meet Dr Kahn and Dr Macy. Dr Kahn comments on the outgoing, happy personality that David is developing. Dr Kahn comments, “Quite the cortisone kid!” He is referring to the stimulating effect meticortin tends to have. But to me, his remark comes under the heading, “How to take the joy out of a mother's heart.”
IV J.F.3 is administered once a day. When I am present, I am allowed quite often to accompany David to the treatment room and help to hold him down. Personally, I find morbid fascination and even satisfaction in watching the probing needle seeking a vein. Sometimes this takes 2 minutes, sometimes 15, during which time David screams. But I find it easier to be present and watch than to pace the corridor. David calms down almost as soon as the injection is over, so I do not dread the daily treatment too much. I am quite relieved, however, when it takes place during my absence. After about10 days, treatments are suspended, as David's blood count is going down.
One day, Chrissie's mother, remarking how much more active David is than the other children, says, “He really acts like a visitor on the ward.” I am. But, as seems to happen over an over again, the slightest encouragement or renewal of hope that we feel is immediately followed by a reversal.
David begins to eat less and be fussier. He develops a temperature owing to a painful infection on his arm. This, the doctor tells me, is caused by some J.F.3 having missed the vein, and is an almost inevitable by-product of regular injections into children's tiny veins.
One evening, having been quite fussy, David has a bowel movement that looks odd to me. It is coal black and very odorous. I show it to Miss Hanover, who tells me that it looks like a hemorrhage. She sends the stool to be analyzed, leaving me in a state of despair. I remember Axel's bloody stools, which preceded his oral hemorrhage and consequent death. David has another similar stool, and the laboratory reports that it is blood. Dr Kahn, in response to my questions, says it looks like a new tumor involvement. When Joe comes at 6-o'clock as usual, I tell him the news. That night we go home with heavy hearts. We have been told that David will receive a blood transfusion. Next morning, he has an IV pole on his bed. He has hemorrhaged more during the night and is still receiving blood.
The next few days have a nightmarish quality. The bleeding takes longer to arrest than the doctors at first expected. This, says Dr Macy, implies that the hemorrhaging is more likely owing to tumor involvement than to medication. I tell the nurses I will no longer change David's diapers myself. I am terrified of seeing once again that black mass. Of all David's symptoms this is the one I am least able to tolerate. While at home, each time the phone rings, I think it is the hospital. One morning at 8-o'clock, when I answer the phone, I think I hear, “Mrs Goldstein? This is Dr Kahn.” I am almost too terrified to go on listening to find out that it is my mother's dentist, Dr Cohen, calling about an appointment for her. These alarms teach me 1 irrevocable lesson. I want David to live as long as possible—I do not wish that “everything were over already.” I look at David and I pray silently, “Do not die just yet; please do not die just yet.”
The bleeding stops in about 3 days. David improves generally. The IV is removed and I can carry him again instead of pushing him in the go-cart (which he never tolerated before he had his IV).
Within a few more days, much to my surprise, we are told that we may take David home. He has been in hospital for 23 days, during which time I had never given home coming any thought, hoping only for maintenance of the status quo. I ask about recurrence of the hemorrhaging and am assured that David's blood is well within safety level and there is no danger. Thus, this particular nightmare has dissolved into nothing. There is no more talk of further tumor involvement and, as far as I can gather, it was after all the J.F.3 that was responsible for the bleeding.
With some trepidation, Joe and I drive David home from the hospital. How will he adjust to nonhospital routine? Will he be as demanding of my attention? How will he and Joshie get along now? Will he sleep well at night? Shall we be able to give him his medicine successfully? Thoughts such as these shade our joy at having David home once more. But our fears prove groundless. Joshie, who we believed had forgotten David as a person (though we always told him when we went to visit David), gives him a riotous welcome, hugs and kisses him, and wants, oh so much, to have him as playmate. David repulses Joshie somewhat; he is not quite up to a healthy 2-year-old's vigor, and he dislikes being touched by Joshie, seemingly afraid of getting hurt. But soon the boys accept each other's habits and get along well. David sleeps through the night and never insists on my being in the room, as he did in the hospital. He eats relatively well and vomits his medicine only occasionally. Above all, his looks improve and, within his physical limitations, he plays contentedly.
Owing to his still low blood count, David does not presently receive chemotherapy. Consequently, Dr Tyler informs us on our second visit to the clinic after his discharge from the hospital, that we need not come in again for a whole week. We decide on the spur of this unexpected information to go away for a week. We leave the following day for Spofford, New Hampshire, where Joe's father has a summer house. For the first time in many months, we do what “normal” families do, and the sensation is hard to get used to. I do not really look forward to the trip, but do feel that we ought to force ourselves to take advantage of the situation.
As it turns out, Spofford proves a huge success. Both children tolerate the 3-hour car ride like veterans, adjust beautifully to the new surroundings, and generally thrive. David, oddly enough in view of the fact that he has disliked being bathed as his bones first began to pain, enjoys the lake more than Joshie, who views the water with fascinated suspicion. David eats enormously and acquires a pink complexion.
We return to Boston on Sunday night, rested somewhat both in body and spirit. Monday morning, David's stool is tinged with dark red. We have no doubt, despite the reassurance the doctors had given us, that he hemorrhaged again, and drive to the clinic utterly defeated. Dr Tyler expresses surprise and suggests various foods that might account for the color of the stool. However, I have previously thought over everything he ate and nothing rings a bell until she mentions beets. Now I am swept by a tide of relief—David, just before we left Spofford, and in between regular meals, had consumed a large quantity of canned beets! I really do not need the results of microscopic analysis to be convinced that for once we suffered a comic false alarm.
Within a week or so, David is put on a new J.F.3 derivative, known as J.F.3-in-oil. It is peanut-flavored and, to our delight, he loves this. We dose him from a glass syringe, and he actually looks forward to his “2 cc's of J.F.3,” which refrain we sing to him as we let him fetch the bottle. In fact, he asks for “ci-ci!” And, as his blood count continues to improve, he is taken off the hated antibiotic. Finally, experimenting successfully, we find that he eats better without meticortin than with it, and consequently, for the first time in about 3 months he need not take any medicine he dislikes. As a result, he is more relaxed than I can ever remember since the onset of his illness. It is a tremendous relief not to have to interrupt his normal activities to administer medication.
Altogether, we have a good summer, despite the minor throat infections to which David is prone. He has 1 spell of losing weight and a week or so of vomiting. This culminates in a semi-fainting spell, characterized by a staring inability to focus. I put David to bed and he seems normal after his nap. Nevertheless, I rush him to the clinic in alarm. Dr Macy can find nothing tumor-wise to account for the seizure, and suggests that some nerve-controlling vomiting might have caused it. In talking to me, however, he refers to David as “a child with such an advanced case of cancer.” This brings me up short. David's comparative well-being over the past few months has led me to forget that half a year has elapsed since his tumor first metastasized and Dr Trapp in San Francisco told us that death was a question of “a very few months.”
The seizure does not recur. The vomiting stops and David is on another little upswing.
As far as x-ray surveys go, taken every 3 weeks or so, they are like a seesaw, “progression of the tumor one time” and “no progression, perhaps even some improvement the next.” So long as David seems well, we are relatively content and relish each day.
Then, in the fall, a new drug, nitromene, is tried on David via intramuscular shots. These make him acutely uncomfortable and have to be discontinued because his blood count is quickly depressed. J.F.3-in-oil is continued. One day, we chance to see Dr Farber in the hall of the clinic. David has recently attained a record weight of 23 lb. Dr Farber points to David, walking with my help, looking rosy and happy, and says, “Isn't this a miracle!” We agree whole-heartedly. In addition to David's own prognosis, we need only look around the clinic to realize how fortunate we are to have David still with us. As he left the hospital, most of the children we knew by name have died.
Chrissie is dead. The last time I saw her, both eyes were black with tumor and her whole face bloated. Her mother, unable to carry the burden alone any longer and convinced that the clinic's chemotherapy efforts had failed, wanted to take her home to New York. She died a month later, still in the hospital.
Lucy is dead, after a brief (entirely unexpected by her parents) return home, during which she was unable to sleep for pain despite pain-relieving drugs.
Jenny of the teakettle is dead.
Ralph, David's first roommate, is dead.
Gracie, David's last roommate, is dead.
And the overcrowded Jimmy Fund Clinic waiting room boasts of but few familiar faces.
Pattie, with an enormous swelling on her neck, is back in a cart and to my mind has the look of death stamped on her face.
Pretty, well-dressed Laurie is going downhill steadily. Her eyes are getting the look of the tumor behind them and she is in hospital more often than out of it.
Melanie, still paralyzed, has, after months of nonrecurrence, developed a new tumor, though she currently feels very well.
David loses his appetite and begins to lose weight. He spends less and less time crawling and playing, and more and more time sitting on my lap. He looks paler and thinner. The next x-ray survey shows a new tumor in his left arm and progression of tumors in both lungs. He gets still thinner and still paler. Diarrhea sets in, accompanied by almost complete lack of food intake. I sit all day long with David on my lap. He no longer plays, but still watches television for short periods of time. The doctors advise us that if he does not take in liquids, he will have to be readmitted to the hospital. The next day, Wednesday, we take David to the clinic. He has taken some liquid and we are given 2 days' grace, until Friday, having informed the doctors that we would not wish to have David go back to the hospital for our sake—only if it becomes absolutely medically necessary. Apparently, they had thought us in need of some rest, but we are able to convince them that any physical rest would be more than outweighed by mental anguish were David to go to the hospital.
David now weighs around 18 lb and looks ghastly. Nevertheless, taking him home that Wednesday, we feel as though someone has made us a gift of 2 precious days.
The following day, Thursday, David is lying on the couch, when he suddenly begins to blink rapidly, whimpering at the same time. Then he tries to get his left thumb into his mouth as usual, to suck it, but becomes very annoyed when his arm repeatedly slips back. I think his arm probably went to sleep, as he has been lying on his left side. The blinking stops, and David seems much as usual. But, as the morning wears on, I realize that David is not moving his left arm at all. Awareness comes slowly that he is unable to do so. I hardly feel any shock, but do telephone Joe to come home from work. Then I call the clinic and speak to Dr Macy. He remarks, “That is certainly an unusual symptom.” I say, “It's the brain, isn't it, doctor?” He replies that examination will tell us more, and we take David to the clinic that afternoon. When we get there, Dr Chalmers, a fairly new staff member, examines him and finds the whole left side paralyzed. The ironic and pathetic fact is that neither Joe nor I had even noticed any paralysis other than the arm. More than anything else, this drives home to us how rapidly David has been sinking recently into physical weakness and consequent immobility. Dr Chalmers says a spinal tap should be performed. We ask, “Why?” He tells us “to eliminate the (unlikely) possibility that the paralysis is caused by an infection.” We are taken aback and, somewhat ludicrously, I have a few terrible moments worrying about polio, which has been rampant in Boston all summer. Is Joshie going to get sick too now? Impossible as it seems, there are now worse things to be contemplated than David's merely having a brain tumor!
Of course, David is kept at the hospital. We are convinced that he will never come home again. We have Joshie say good-bye, simply telling him that David is going to stay at the hospital so that doctors and nurses can try to make him feel better than we have been able to do at home.
Once again, I unsuccessfully choke back tears as I carry David from clinic to hospital. Conditions are crowded owing to the polio epidemic. Division 34 has been displaced and the tumor patients have but 1 small ward to themselves. There are no free beds at present, so David is placed in a regular infants' ward. I am quite relieved not to have to face his fellow-sufferers right now.
The spinal tap reveals no evidence of infection. Skull x-rays are taken, which reveal metastases. David's tumor has spread to his brain.
We now feel the end is a matter of a very few days. But x-ray therapy is commenced, together with more IV J.F.3. The paralysis does not spread and, to our surprise, David and we once again adjust to November hospital routine—only at a much lower level of well being than the previous June.
Visiting hours are limited to afternoon and early evening. This causes us much anguish in prospect, but actually we find that spending 6 hours with David is utterly exhausting. Also, we feel it good that I be able to spend the mornings with Joshie.
During our time with David, we coax him to eat, as we are threatened with the alternative of IV feeding. And we carry him up and down the short hall, sitting down only a few minutes at a time to rest. We are glad that he shows enough spirit to insist on being walked. David has a small cubicle to himself. Glass partitions separate him from adjacent patients on either side. The ward seems to be some kind of catchall. Several of the children (mostly infants) are in hospital for diagnosis. The turnover is fairly rapid. After a few days, Joe (who spends almost as much time with David now as I do) and I begin to wish we were with the other tumor patients. The nurses, although kind, are not accustomed to tumor patients (David's chart, incidentally, is marked with “visitor”). And the doctors from the clinic, although, of course, not neglecting David in any way, are not in his ward very often, as he is the only tumor patient there. Their presence somehow has always been reassuring, even when they were not occupied with David personally.
Dr Chalmers from the clinic and Dr Jenson, a hospital resident, are in charge this month—November. The latter has an efficient air about him, but he is still a stranger to David's case as far as we are concerned. One day, while I am visiting, the nurse informs me that David will be given an IV needle—both for feeding and also to make IV J.F.3 easier to administer, as it has become increasingly difficult and trying both for David and the doctor to find good veins. David is carried to the treatment room. Twenty minutes later, he is carried back to his cubicle, his right arm bandaged to the hilt. I cannot contain myself. I had previously requested from Dr Schaeffer, another fairly new, very kind, and competent clinic staff member, who examined David on his admission to hospital and performed the spinal tap, that if an IV became necessary, his right arm not be used, as it was the only 1 David could move. I had assumed that such selection would be a matter of course anyhow and Dr Schaeffer has said nothing to disabuse me. Now I run out into the hall after Dr Jenson, “Sucking his thumb is David's only comfort now, and you have taken it away from him by tying down his arm.” “Can't he suck the other thumb?” asks Dr Jenson. “His left arm is paralyzed” I reply. I am dumbfounded. It had not occurred to me that Dr Jenson could be unaware of the symptoms, which, after all, had precipitated David's return to hospital. Had he told me that he was sorry, he could not find a good vein in the left arm, I would have understood, but his apparent ignorance of the details of David's history leave me in a furious rage. Joe and I discuss this with Dr Lock, who rather brusquely dismisses our complaint. Nevertheless, David's arm is rearranged so that he can suck his thumb, and I observe that everything is carried out to make him comfortable. We simmer down, of course, and realize that we were upset because the treatment by the clinic and by Division 34 in the hospital has always been so wonderfully human and individualized that the 1 aberration took us by surprise.
Now the wheeling in the go-cart begins again, just as when David was hemorrhaging the previous June. Up and down, up and down. A few days later, we are transferred to “Infants Upper,” where the tumor patients' ward is now located.
As I enter this ward, I really feel as though we were coming home. The facilities do not compare with old Division 34. As in the infants' ward from which David has just come, each child has but a small cubicle. There are almost no cooking facilities for parents. There are no balconies and only a small, cheerless playroom, hardly ever used, containing some toys and a record player. A sole television set, at 1 end of the ward, can be watched from only a few beds. Miss Hanover is no longer there, but Miss McDonald and my old adversary, Miss Ross, are in the receiving line. And oh, the familiar faces on the beds! There is pretty Laurie, her cubicle richly overflowing with dolls, toys, balloons, and Halloween decorations. She looks dreadfully pale and sick, with both eyes protruding and expressionless from her tumor. Baby Doris is back—forehead and arm bulging with tumor and eyes squinting. Baby Rosie is back too, again on a plastic sheet, but her skin seemingly much improved. She is now about a year old, has a lovely, sunny smile for everyone, and has learned a cute trick of raising her head and shoulders while lying on her back, like an acrobat. She has taken poor Doris's place as the general focus of admiration and exclamation by passersby. Doris is much sicker and less active than during the summer.
There are a number of new leukemia patients, still at the beginning of their journey. Also on the ward are a few advanced leukemia patients, several of whom die within a week. Both new and advanced cases seem to have more external sores than I had previously been aware of. They present a truly horrible sight, but one that everyone gets used to and becomes hardly aware of.
The patient who seems worst off in respect to suffering is Richie. He is in the bed next to David's. I remember him from the clinic, for I had noticed 1 arm missing. I learn from his mother that his arm and shoulder were amputated in a futile attempt to arrest a tumor. Now his forehead is bulging, his eyes are red and swollen, and his legs pain him. He cries a great deal and plaintively asks for the medication and shots, which temporarily relieve his suffering.
I wonder about Katie, a 6-year old, who lies in bed, still and sullen, while mother and father take turns sitting with her. They are tense to the point of snapping at each other. And a bevy of weeping relatives frequently surrounds her bed. I discover that she was recently operated on for what was believed to be a harmless fatty tumor (her mother having noticed a swelling while bathing Katie). However, on opening her up, the surgeon found a mass of malignant tumor throughout her abdomen, too extensive to be removed. So now she is awaiting the beginning of therapy and her parents have not yet come out of shock. I talk to them and tell them that David was diagnosed 16 months ago, without being too sick until recently. I try to tell them that they will get used to their situation and that ahead of them lie good and bad days. But perhaps, they knew better than I. Three mornings later Katie's bed is empty. She had run a very high fever the previous day and died during the night.
The nurses' station is at the end of the ward, and facing it at right angles to the wall, behind the serving table and refrigerator, is a separate room containing 2 beds. This I come to think of as the “dying room.” Because of limited space, dying in Infant's Upper is not quite as graceful and unobtrusive a procedure as it was in Division 34. For I do not believe any child who was placed into that little room ever left it again. Whether it is a question of hours or days or even weeks, that little room is the last stop before the cemetery. This has an unfortunate effect on the other parents, for, inevitable though we may know our children's death to be, we dread the transfer to the little chamber, even though death occurs in the ward also. Throughout David's stay in the hospital this time, Daisy's parents keep watch in the dying room. This 2-year-old leukemia patient is expected to die momentarily but lingers for weeks, whereas her young, tired parents are on 24-hour call. After this experience, the clinic's doctors are more reluctant to make predictions, for they do not like to expose parents to such enduring tension. But it works both ways. Katie, as I have said, dies quite suddenly. Teddy, an alert 6-year old suffering from a disease of the lymph glands which has entered his bone marrow and is now akin to leukemia, was admitted a few times previously with a growth in the windpipe threatening to choke him to death momentarily. He lay in a coma in an oxygen tent for days, but recovered sufficiently to leave the tent for hours at a time, to eat, play, watch television, and chat with his delighted parents. But 1 evening, his mother goes home (a 2-hour trip from Boston) and next afternoon, when I visit David, Teddy's bed is empty. Apparently, though there was time to recall his parents. He was an only child, who had previously suffered from cerebral palsy and had only recently started to walk. His father is a diabetic and, according to my third-hand information, they have been advised not to have more children. I feel terribly sorry for them, as I do for all parents of an only child, and particularly those who cannot have others.
Visiting hours here are 2 to 6. David is quite sick and demanding. The first hour after my arrival, I find it hard to placate him. He is hungry, but does not know what he wants to eat (I bring a whole array of victuals each day, ranging from meat, milk, and rolls through cake and ice cream). Sometimes, he does not want me to lift him out of bed, but most of the time I push him in the go-cart while he still has an IV, or once it is removed, carry him up and down the ward, past the nurses' station, along a hall, and into and around a lecture room when this is not in use. The complete round, generally used by a whole procession of parents pushing go-carts, takes about 3 minutes. We must walk miles each afternoon.
David has a horrible-sounding cough, which makes him choke, but apparently there is no sign of his lung tumor having progressed significantly. For about a week he loses his voice, and even I can barely hear his hoarse whisper when I put my ear close to his mouth. This worries us, lest he should want something and no nurse is able to hear him.
He is utterly helpless now. He looks like a wraith and he is almost totally bald, having lost his fine blond hair as the result of x-ray therapy to the skull. Periodically, he suffers from diarrhea and vomiting. He runs a fever, which I put down to “hospitalitis,” having noted repeatedly that children, after a week or so of hospitalization, are prone to fever, colds, and coughs, whatever the nature of their tumors.
Then he starts to hemorrhage though his bowels again and is given blood for several days. This time, we are not too concerned about that particular symptom, for we have been warned that as a result of his latest course of IV J.F.3, his platelets (denoting ability of the blood to clot) are dangerously low. Besides, David is altogether in such terrible condition that 1 symptom more or less hardly counts. Anyway, the hemorrhaging stops after a few days.
Often, when we go home at 6, we are the last parents to leave, because we like to put David to bed and tell him his bedtime story (this makes him accept our departure with equanimity). As a result, we often see the ward in a new light. For, however she may whine and wish to be babied while her mother is with her, at night, 5-year-old Laurie, on her deathbed, takes over the ward and rules it with an iron thumb. She requests the television to be turned off and she tells crying patients to be quiet. Her chief protagonist (though the battle is most unevenly matched) is armless Richie of the bulging forehead. His constant crying or whimpering intensifies when his parents leave—perhaps because he is lonely; perhaps because his pain is worse at night:
Laurie: “Stop crying, Richie.”
Laurie: “Stop crying, Richie, shut up!”
Laurie: “You want to get out of here, don't you, Richie?”
Richie: “Yes, Laurie, I want to go home.”
Laurie: “Then you've got to be quiet. And another thing, Richie, You've got to eat.”
Richie: “I eat, Laurie.”
Laurie: “You don't eat as much as I do, Richie. If you want to go home you'll have to eat more, Richie.”
Once again, the days slip into routine. We think we see a little movement in David's paralyzed arm, but the first x-ray survey taken since therapy commenced shows “no improvement—a worsening if anything.” We are a little surprised—hitherto x-ray has always yielded temporary benefits, but we are not too greatly stricken. After all, what can we expect? David is now working on at least his eighth tumor—the original in the kidney, then the left hip and the right knee, then 2 in the left lung, then the right lung, then the right arm, then the skull. This history is known as “extensive metastases,” the disease being classified on his chart as “metastatic embryoma.”
Nevertheless, the day after this news, we perceive a distinct movement in the arm. The doctors confirm this. To my great surprise (though Joe claims not to his), Dr Chalmers informs us, “David is improved. You may take him home tomorrow.”
So, eager yet reluctant, frightened, and pleased, we take our David home once more. We are afraid Joshie will cry when he sees him—now a veritable skeleton, with his fine, blond hair gone, exposing a red, blue-veined skull. But once again, our fears on this score prove groundless. Joshie receives David with open arms and accepts our explanation that he should not kiss or play with David (who winces and cries at the slightest physical contact from Joshie) because David is not feeling well. We take David to the clinic every other day and each time expect that they might keep him. For he is truly, and for the first time, totally sick and disabled. He lies on the couch or in my arms, or on our bed, all day long and wants to be rocked. “Lock” he requests. On our bed, I do this by sitting and bouncing up and down. This enables me to read or write at the same time. And sometimes David lets us roll his crib into the living room—there he sometimes watches television while I rock his crib. Surprisingly, he eats rather well, and has almost no diarrhea or vomiting. But he hardly sleeps at all. He dozes off for short periods of time, day or night. The rest of the time, day or night, we rock him. It is as though David wanted to live each single moment, supine though he is, and is reluctant to relinquish consciousness even for a moment.
Joe, of course, can not go to work anymore because David needs 24-hour attention, and there is still Joshie to look after. We find that though Joshie is wonderfully patient, he is reluctant to be with babysitters at this time.
So, we bide our time. The days seem endless and yet we realize that soon we shall consider them as having been only too short! After about a week, we feel quite settled and adjusted. We even get a wonderful housekeeper through the Family Services Association, of whom Joshie is very fond and who is unobjectionably cheerful and good for all of us. So Joe goes back to work for a few hours each day.
At the clinic, David receives penicillin shots. The nurses hate to give these to him (they alternate in this duty); there is no flesh left on his little bottom—he is nothing but skin and bones. Other parents often fail to recognize him, even though he is in my arms and they know me. When I tell them it is David, there is a shocked silence. The doctors make it plain that they are willing to readmit David to hospital at any time if caring for him at home becomes too much for us. We explain that we wish to keep David at home as long as possible, with 2 provisos: 1, if he needs special care that we can not provide at home, he should go back to hospital and 2, when the time comes that he looks ready to die momentarily, we should rather not have it happen at home, for Joshie's sake.
David's breathing is quite labored, but his choking cough has abated. Hence, despite all I know about his condition, I am surprised and shocked when, 2 weeks after his return home, Dr Chalmers says, “He needs to be in an oxygen tent.” So, we have Joshie say good-bye to David for the last time, and take David back to the hospital. One last reprieve: he is not taken to the dying room.
(The concluding part of this narrative is written in diary form, as I set it down while the events were actually occurring.)
Today David was admitted to hospital for what I fairly believe to be the last time.
His breathing is so labored that he has been placed in an oxygen tent. I am just beginning to become familiar with its mechanism. This afternoon, it was hot as an oven and, on calling a nurse, I found it had run out of ice. From now on, of course, I shall watch out myself. He is as alert as ever, constantly asking for food, drink, and to be rocked. And so I feed him, and I change him, and I rock him. Sometimes he says “baby,” and so I sing “hush-a-bye baby on the tree top” over and over until I am tired of it and he seems to have tired of it as well. Joe and I have arranged between us to be with David 24 hours a day. The doctors tell us that nothing more can be done for him. They refuse to predict when the end will come, but give us permission to stay day and night. This afternoon, an unsuccessful attempt was made to tap his chest for fluid to relieve his breathing. The small amount of fluid that Dr Chalmers and Dr Lauren were able to remove, so they tell me, indicates that the pressure is owing to tumor rather than pneumonia fluid. When David is returned from this procedure, he accusingly says “Doctor.” I reply: “Did the doctor hurt you? He did not mean to; he was trying to make you breathe better. Anyway, he is all done now.” Later, when Dr Chalmers stops by his bed, David looks at him and says, “All done.”
Now it is really only a question of waiting and hoping for as little suffering as possible. Yet, I still refuse to accept this more than superficially. I simply cannot conceive that David will soon have ceased to exist and to be a part of our lives. He is gliding from life so gracefully, and even in near-death is still, to us so beautiful, with his eyes so blue and so clear. Today he said “milk” for the first time, instead of his usual “ba-ba” (for “bottle”). And when the doctor inadvertently held his pen near the bed, David said “pen.” We gave him pen and paper, and he scrawled for a time. He got annoyed at his immobile left hand, moved it with his right, and whimpered. And, for some unknown reason, he gets annoyed when anyone, even Joe, puts his hand at the foot of the bed. “Away” he wails, pointing an accusing finger. He showed no surprise or sorrow at reentering the hospital with the additional strangeness of the transparent, taut, plastic enclosure, which we call an oxygen tent. He said “home” only once, and “up” several times. We explained each time that we could not pick him up because the tent is to help him breathe more easily. Whether or not he understands I do not know, but he has not clamored to be picked up, as he has at home these past 2 weeks. I never cease to marvel at the apparent ease with which children adjust to impossible new situations. Perhaps it tends to show up later in their emotional health. Unfortunately this is not a problem with which David will ever confront us. No! I must change “will ever” to “is not likely ever to.” I simply cannot accept the imminence of his death; I cannot. Yet, surely, lack of emotion, interrupted only by occasional spasms, and not really affected by the hoarse, rasping sounds emanating from David's bed, must denote some kind of acceptance. This morning, when we took David to the clinic, I almost wished for some change, even knowing that the change could only be for the worse. Now I could kick myself for this thought.
Nevertheless, I am calm. This is the first hospitalization unaccompanied by at least a minor flood of tears on my part. I dispassionately survey the other patients. I note with relief that instead of being put in the dying room, David occupies the bed that Laurie occupied 2 weeks ago. She died last week. Richie is in the dying room, looking inhuman with his bulging forehead, swollen face, and red eyes that have become sightless since I last saw him. Daisy is dead at last; 2 weeks ago it looked as if she would linger forever, fighting for each breath. Baby Doris is back, receiving blood. I am glad to see Perry, because I enjoy talking to his mother. And, speaking of mothers, Ruth's mother had tears in her eyes when we said good-bye at the clinic this morning. Ruth, I believe, has just ended her first remission, and they still have a long way to go, I think.
There is a new, lively, well-looking girl who has been operated on for a Wilms tumor. According to Perry's mother, this child's mother asked her if she knows any other cases with a Wilms and, in Perry's mother's words “I didn't have the heart to tell her of David.”
And so I have sat and stood in the hospital all afternoon. We have decided that I am to be the one to spend nights at home because I am pregnant. And I have thought about my diet, food, sleep, television programs, and Florida. And I have just begun to write, since David dozed off for a while and is less demanding. And if, a year ago, someone had told me that, given my present situation, I should be writing about it, and thinking that if anyone asks “What are you writing?” I should reply “Oh, some notes.” “Notes on what”? “Notes on history,” I should have said they were insane.
I went home for the night, and relieved Joe at 9:30 this morning. David is alert as ever, but his breathing is worse. At 1:30, it becomes extremely labored, and I call Joe. Joe arrives. We decide both of us will stay. Suddenly, David says “record” and “train.” There is a record player on the ward, but his favorite record at home, “Train to Sleepyland” had broken some time ago. I play another record and then I call several music stores till I find one that carries it and ask to have it delivered to the hospital immediately because it is for a child who may die at any moment. The record arrives in half an hour. We have also bought him a musical animal playing “hush-a-bye baby on the tree top.”
I play the “Train to Sleepyland” record and sing “hush-a-by baby” simultaneously. I want him to have all his little pleasures together at once. But I am afraid the noise will prevent me listening to his breathing. I no longer dare to read much, but watch his every breath.
Dr Hassan, the hospital doctor, examines David and says he is no worse than he was in the morning. Nevertheless, “so that the nurses may observe him better,” he transfers David to the dying room. The last stop.
I lie down on a cot at 11-o'clock. Joe has returned from home, where he went to tell Joshie that David would probably never come back because he is dying of a Wilms tumor. He also picked up clothing for us—hopefully we are preparing for a lengthy siege. David is dozing, his eyes rolled slightly upward, as they have been periodically all day. He has remained alert throughout most of the day, even holding his own bottle a few times (he is very thirsty) and getting very excited when anyone leaves the door to the dying room open. So I shut it, promising to call the nurse, should Richie (now David's roommate) want anything.
At 11:45, Joe wakes me, “They are giving David oxygen.” At first I do not understand. Has he not been getting oxygen for the past 48 hours? I see the nurse holding a mask over his face and pressing his chest, calling loudly “David.” She speaks to us, “He has stopped breathing—now I hear another breath—now he has stopped again.” The doctor comes. David is dead. There was no choking and no struggle for breath at the end. He was dozing while the nurse, having remade his bed, took his temperature; he took his last breath and simply expired. And, newly dead, he looks more peaceful and more like his old self than he has for several weeks. May he rest in peace. Amen.
© 2008 Lippincott Williams & Wilkins, Inc.