MAY, 1977
SCOTT'S FIRST SURGERY 

Later, in early May, 1977, after Rena and I had spent a month in the hospital with Scott, a myelogram disclosed that his pedicles [bones surrounding his spinal cord and canal] appeared to be irregularly shaped and pushed away from the spinal column at the bottom in the shape of the letter "J".  This test result, together with the earlier finding of several suspected tumor cells and an abnormally high protein count in Scott's spinal fluid, caused the doctors to tentatively conclude that there were intra dural tumor cells together with a massive extra-dural tumor involvement at the L-4 level of Scott's spine and it was strongly suggested that a diagnostic laminectomy be performed immediately in order to remove tissue for pathological examination.  Although brain shunt surgery had been avoided in early April, 1977, spinal surgery now seemed inevitable.

On the day of the surgery, on May 16, 1977, I met with Dr. Carmel, at the Neurological Institute to be informed of the details of the neurosurgery and to sign an "informed consent" form.  This was the first time I had met him or even spoken to him although this formality of giving informed consent to Dr. Carmel was to be repeated many times over the eleven years of Scott's illness, in preparation for brain shunt surgery in January, 1986, spinal surgery in November, 1986, February, and March, 1987, brain surgery in April, 1987 and numerous shunt revisions between January, 1986 and April, 1988.  My first impression of Dr. Carmel in 1977 was of a surprisingly youthful, well trained cool neurosurgeon.  He wasted no time in telling me that nothing that he was going to do that day would cure Scott but that the surgery was for diagnostic purposes only and that there were risks that Scott could be hurt during the surgery.  I remember feeling somewhat faint as he ticked off the possible neurological deficits that could result from the surgery itself.  I quickly signed the required form and we arranged to meet after the surgery and I returned to Babies 11 North at Babies Hospital to accompany Scott and Rena on the long and lonely trip on a rolling stretcher through the underground tunnel connecting Babies Hospital with the Neurological Institute.  Scott was very apprehensive and I was very worried to say the least not only about the immediate concern of possible surgically caused neurological deficit to Scott but also the more long range concern of what the pathological diagnosis would ultimately reveal.  I hadn't even shared the gist of Dr. Carmel's little chat with Rena.  I felt that it was enough for her to have to cope with the concept of our son undergoing surgery for the first time.  Scott masked his natural fears of surgery by asking an unending stream of questions concerning how long would the surgery take?  How long would he be asleep? Would his parents be with him the whole time?  When could he eat and drink again?  When would he be brought back to Babies Hospital?  He never asked whether it would hurt although I am sure that the issue of pain was on his mind.  

You might wonder whether Scott understood or comprehended the seriousness of his medical condition, especially during his early tender years.  The answer is that he did as illustrated most dramatically to me by Scott one Friday night in April, 1977, when he was only four + years old.  It was after dinner time and Scott wanted an ice cream sandwich for dessert.  Since he was in the hospital for tests, he was not confined to bed and was free to go about the hospital accompanied by a parent.  Rena and I were staying full time right in Scott's hospital room with him, sleeping on a mattress or in a chair.  It wasn't very comfortable but we had agreed to always be by his side, where medically feasible, in order to give him the comfort of knowing we were there with him during this terrible ordeal.  I agreed to take him downstairs to the cafeteria where they sold ice cream sandwiches from a vending machine.  After Scott had his ice cream, on a sudden impulse, I took him into the nearby ecumenical Chapel, pushed the electric button to switch the setting to one suitable for the Jewish faith and sat down to pray, with Scott on my lap, eating his ice cream sandwich.  There was no one else in the Chapel but us.  Suddenly, Scott interrupted me, asking whether "Papa Ralph" [my late father who had passed away in 1974] is in heaven.  When I told him that he was, Scott looked me straight in the eye and inquired "Am I going to heaven too?"  I cried like a baby uncontrollably for several moments.  Such insight in the mind of a young child.  We hadn't told Scott anything about his medical condition other than that the doctors were trying to find out why he had headaches and was throwing up and how to stop it.  I thought for a moment that there can't be anything wrong with Scott's brain if he can think like that.

Getting back to Scott's spinal surgery in May, 1977,  I remember the day of Scott's first surgery so well as if it were yesterday.  Not only were we apprehensive about the surgery itself and the subsequent diagnosis, this was going to be the first time we were separated from Scott ever except for a trip we took to the Soviet Union in 1973 when he was only eleven months old.  The procedure at Babies Hospital allowed us to stay in Scott's room with him so long as he was a patient on Babies 11 North.  Upon his transfer to the Neurological Institute for surgery however, his room at Babies Hospital had to be vacated and we had to make other arrangements for sleeping over.  In any case, we couldn't join him in the operating suite nor could we sleep in the recovery room or the Intensive Care Unit at Neurological Institute.  We made arrangements to stay in a medical student's room at Columbia Presbyterian Medical Center.  The consolation apart from our concern being separated from Scott was that this was the first night's sleep in a real bed for Rena and me in five weeks.  Also since the surgery took several hours, my sister-in-law Madeline and my friend and Scott's godfather Carl Bogan, a retired NYC police detective who had worked with me in the NY County District Attorney's Office when I was a young prosecutor, joined us for the long wait during the surgery.  They helped to pass the time by making small talk and I remember they even got us to join them at a nearby restaurant, Salt and Pepper,** for a meal.  In any event we were anxiously awaiting Dr. Carmel on the 9th floor outside the Neurological Institute Intensive Care Unit when he came down from the operating room to report.  He seemed more cheerful and optimistic then before the surgery.  Rena and I were very appreciative to have Madeline and Carl Bogan present for moral support.  We all held on to each other tightly as Dr. Carmel said that the surgery went well with no unforeseen complications.  He told us that he was pleasantly surprised to be able to report that the pre-surgery radiological images from the myelogram, which he explained were after all only black and white shadows, were a red herring and that he did not find any massive extra dural tumor tissue upon surgical exploration.  What had caused Scott's pedicles to push away from his spinal cord near the bottom in the shape of a "J," as observed in the presurgical myelogram was in fact simply a mass of fatty tissue, probably developed after starting a course of anti-inflammatory steroid drugs [Decadron] in early April, 1977.  In fact, he indicated that the abnormal course tissue he was able to visually observe and partially remove from Scott's spinal cord for later pathological examination, upon gross visual examination, based upon his experience, was consistent with self limiting inflammatory tissue.  Although he warned us that this was only a very tentative and preliminary observation subject to a more definite pathology diagnosis, and that the presence of tumor cells could not be ruled out, his comments gave us new hope for we now knew that there was no mass of tumor tissue in or outside of Scott's spinal cord, as previously strongly suspected.  Further, he told us that inflammatory tissue in the central nervous system can occur after a simple virus infection and it is usually self limiting.  That is it goes away as mysteriously as it appeared without further treatment.  Now we had to anxiously await the report of the neuropathologist.  

As we were being briefed by Dr. Carmel, the elevator door opened and Scott came rolling by, attended by a crew of anesthesiologists, and nurses, trailing him with a portable oxygen tank connected by plastic tubing to a face mask.  He was conscious and moaning words which we couldn't understand.  The group stopped briefly to allow us to kiss him and whisper to him that we were there and would be with him shortly at his side in the Intensive Care Unit as soon as they had transferred him to a hospital bed and made him comfortable. Just seeing him alive and awake gave us great joy and we couldn't wait to be at his side.  

Shortly, the nurse came out and got us and brought us to Scott's bedside in the Neurological Institute Intensive Care Unit.  By now Scott was fully awake and alert loudly demanding something to drink.  The nurse explained that first he would be limited to sucking on some ice chips until she was able to hear some bowel sounds with her stethoscope.  He recognized us immediately and repeatedly demanded an explanation as to why we had broken our pact to remain at his side during the entire hospital stay.  Naturally, he complained of some back pain but this was to be expected.  Shortly, Scott was asking how long before he could eat and when would he be transferred back to his room at Babies Hospital.  From these signs, we knew Scott was on the mend and things started to look up after a long and tense day.  I remember watching the 6:00 P.M. news on television that day in the Intensive Care Unit and seeing a story about a helicopter landing gear strut that had broken upon landing on the rooftop heliport of the Pan Am building above Grand Central Station causing one of the rapidly spinning rotors to hit the roof, break off and fall a block away on Madison Avenue, killing an innocent woman passerby.  I thought to myself that but for Scott's hospitalization and surgery, I could have been the deceased passerby since I often walked on Madison Avenue going to or from lunch and back to my office building, the Helmsley Building at 230 Park Avenue, just north of the Pan Am building.  Such is the fortuitous happenstance of life and death.  

In any event, Scott was back from surgery and doing well, Dr. Carmel was more optimistic about Scott's future and things did not look so black and dismal at the end of this day as they had at its beginning.  During the next eleven years until Scott's death in April, 1988, we spent many a similar day experiencing the emotional roller-coaster effect of hope and despair or despair and hope.       

As I recall, within a day or two, Scott was well enough to be transferred back to Babies Hospital from the Neurological Institute ICU.  This time Scott looked forward to the trip through the underground tunnel connecting the two hospitals.  After all, Babies Hospital meant less restrictions than the ICU with a TV in the room and of course once again we all looked forward to the family being together.  Scott was particularly chipper when we got a message from Dr. Gold that he wanted our consent to bring Scott before a group of doctors in a large auditorium so that he could present Scott's case at Grand Rounds.  Soon we were in the tunnel again on our way to Grand Rounds.  Scott still had an IV*** line attached to him and the plastic IV bag was strung on a pole attached to his rolling stretcher as he was wheeled into the large auditorium occupied by a sea of white coats.  Dr. Gold introduced Rena and me to the audience as Scott's parents and prefaced his remarks about Scott's case by telling the doctors in attendance that Scott was one of the few patients of his age that read the NY Times which he had observed him doing one day as he came into his hospital room during rounds.  During the course of Dr, Gold's presentation, he turned to me from time to time and engaged in some dialogue concerning Scott's medical history and condition.  I mention this because subsequently, one of the doctors, a hematologist, who was in attendance at Ground Rounds that day, was later called in to consult when it was suspected that Scott might have leukemia and immediately engaged me in a professional discussion concerning my opinion with respect to certain of Scott's symptoms and laboratory test findings.  When I protested that my opinion as a lay person was irrelevant and unimportant, he said that he had assumed that I was a physician based upon the fact that Dr. Gold had engaged in the dialogue with me during Ground Rounds, using medical terminology.

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