Scott Goldstein's Memoir by David A. Goldstein

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LATE MARCH - EARLY APRIL, 1987

The results of the CT scan were most alarming.  They showed apparent tumor pressing upon the optic nerve in the optic chiasm which explained Scott's intermittent loss of sight.  Scott was admitted to the NIICU and his brain shunt was tapped to relieve intercranial pressure.  Of additional concern was the fact that Dr. Carmel was away and although other covering neurosurgeons were available to operate if Scott's condition worsened, neither we, as parents or they as doctors, were anxious for anyone to touch Scott other than Dr. Carmel.  I stayed with Scott 24 hours a day at NUICU.  I caught some sleep on a couch in the waiting room and Rena anxiously waited by a telephone with the Sedakas.  As I sat next to Scott's bedside in the NIICU for several days,* my mind wandered from all conceivable outcomes as varied as Scott's changing neurological condition.  At times, he could see and was very alert.  I can remember one afternoon, Scott conversed with the adult patient in the next bed.  When he wasn't going through his repertoire of jokes, he was giving him directions on what subway trains he should take to get to work and what trains his wife should take to come to visit him at the hospital.  At other times, he was doing his imitations for the medical and nursing staff.  He loved to do President Reagan, Billy Crystal, Hulk Hogan and Eddie Murphy.  At other times, he couldn't see and was lethargic and sleepy.  All I could do was to sit there and worry and hope that nothing drastic would happen until Dr. Carmel returned.

Your mind starts to play tricks on you when you are under stress and you can imagine the worse case scenario from minimal cues.  Late, one morning during this admission, I noticed that all of the patients immediately around Scott in the NUICU had been transferred out.  There was only one bed where there had previously been five.  I should have realized that patients come and go constantly in the ICU as they recover from surgery and are well enough to be transferred to other parts of the hospital.  Scott was attached to an electronic monitor, constantly monitoring his vital signs [i.e., heart rate, respiration, etc.]  His ICU nurse was going into the nurse's conference room on her lunch break for a half hour or so and left us alone.  She must have told one of the other nurses to keep an eye on Scott.  The Charge Nurse at the main nursing desk had a separate master electronic monitor before her to monitor all of the patients in the ICU.  Scott wasn't doing very well this day.  He was very lethargic and sleepy and his responses when awake, were not particularly appropriate.  I must have had my head on Scott's bed with my eyes closed for when I looked up, there was no one there and I felt all alone with Scott.  I imagined that Scott was about to die and this was the way the nursing staff left a dying young patient with his parent.  I never forgot that moment.  Although frightening in one respect, we were so peaceful together, all alone, with no other patients or hospital staff to interfere with our privacy.  

BRAIN SHUNT EXTERNALIZATION

SCOTT HAS MAJOR BRAIN SURGERY AND SERIOUS COMPLICATIONS

[HIS THIRD AND FOURTH BRAIN SURGERIES]

  When Dr. Carmel returned on Monday, March 30, 1987, he temporarily externalized** Scott's brain shunt to further relieve pressure.

He quickly sized up the situation and recommended immediate brain surgery in the optic chiasm region to excise tumor tissue and relieve pressure on the optic nerve.  The surgery was performed during the evening of Wednesday, April 1, 1987 and was quite long***  Rena remained anxiously by the telephone with the Sedakas.  I remained at the Hospital alone and I don't recall anyone else being with me.  When Scott came down from the surgery in the wee hours of the morning, his head was swathed in bandages and he was just starting to awaken but his responses were not comprehensible.  Dr. Carmel told me that he had removed some but not all of the tumor tissue and that we would have to await the results of pathology examination of the tissue in order to know whether or not radiotherapy or chemotherapy would be appropriate. Dr. Carmel told me also that surgery in the optic chiasm and in the hypothalamic region often resulted in the patient's temperature mechanism being disrupted as well as disruption of his electrolyte balances and that it might be necessary, either temporarily or permanently, to have to give Scott an artificial hormone contained in "DDAVP" to control his intake and outflow of fluids.  As I sat at his bedside throughout the night, his responses could be understood but were not appropriate.  When I would ask him who I was, he would repeatedly say "You" instead of "Dad" or "David".

 

SNOOPY COMES TO SCOTT'S RESCUE  

By morning, Dr. Carmel was concerned.  In the meantime, Scott had been placed on a respirator to assist his breathing.  He needed this life support in order to breathe.  It was decided to send him down to the basement Neuroradiotherapy Department for an emergency CT scan.  Several doctors and nurses gathered around his bed to prepare him for the trip downstairs.  Instead of the respirator, an Ambo bag was connected to a tube in Scott's throat and life saving air was supplied manually during the trip.  Scott was not conscious and as we quickly travelled through the halls and the elevator to the Neuroradiotherapy Department, the doctors and nurses were constantly calling Scott's name, anxiously looking and listening for a response, but none was forthcoming.  I was very concerned.  What was happening?  No one was telling me all of the dire possibilities.  It didn't take much imagination from all of  the staff surrounding Scott to realize that he was in deep trouble and what ever was going on, it involved life or death.  When we arrived at the Neuroradiotherapy Department,  I asked the group of doctors and nurses if I could try to get a response from Scott and they quickly moved aside and let me come close to him in his rolling stretcher.  I said "Scott, give Daddy a Snoopy sign'*** to which Scott immediately responded by moving his fingers in the appropriate manner.  The doctors and nurses and yours truly burst out in an immediate and spontaneous roaring cheer.  We were all so happy.  Scott was conscious; he had obviously heard and recognized my familiar voice and as sick and weak as he was, he was able to make an appropriate response.

 

Later Scott and I taught a patient who had had a stroke, to communicate by using the "snoopy" signs.  This man had been an investment banker and was a West Point graduate.  Because of his inability to communicate normally, he had become very frustrated and depressed.  It was heartwarming to see this mature man smile weakly as he managed to learn to communicate once again by using our "Snoopy" signs.

 

The CT scan revealed post operative complications.  Apparently, as the result of the surgery, pressure had been relieved and of course some tumor tissue had been removed.  As a result, after the surgery, S+cott's brain had torn away from the skull, causing subdural hematoma.  Simply stated, there was now a mass of fresh blood and some air bubbles under Scott's skull, pressing on his brain, causing life threatening intercranial pressure.  Additional emergency brain surgery was necessary to be performed immediately to relieve the pressure.  Dr. Carmel took Scott back to the operating room, a burr hole was drilled in Scott's skull and a drain was put in place in order to remove the blood and relieve the pressure.  The vigil began again waiting for Scott to recover.  He received a blood transfusion, with Rena and I and Neil Sedaka and even one of Scott's teachers donating blood.

 

SCOTT HOVERS BETWEEN LIFE AND DEATH

These were difficult days.  Scott was on and off the respirator**** as breathing problems arose and improved.  At times, he was comatose.  They were having great difficulty in controlling Scott's electrolyte balances, requiring constant and vigilant monitoring and giving him sodium, potassium or magnesium or DDAVP and restricting fluids.  Scott was very weak and to add to his problems, suffered an acute allergic reaction to the administration of "vancromyicin".  As a differential diagnosis, the doctors said that Scott's breathing problems and comatose state was caused by the allergic reaction, pneumonia and/or low sodium.  During this period when Scott was on the respirator, it was very frustrating for him to communicate.  He couldn't speak because of the breathing tube in his mouth and he couldn't write because he was either too weak or he couldn't see.  We did have success however with our Snoopy sign language which sure came in handy.  In addition, Rena, who has the welcome ability to read lips, was often able to understand Scott by watching his lip movements.  She would repeat out loud what she interpreted him to be communicating and Scott would signal with Snoopy signs whether she was correct, which often was the case.  By April 6, 1987, Scott was alert and reading signs placed in front of him.

CHEMOTHERAPY

One day, we were told that the pathologists had determined that the tumor tissue in the optic chiasm was very malignant primitive neuroectodermal tumor ["PNET"]****** which they suggested might be particularly adaptable to chemotherapy treatment.

Rena and I agreed to start chemotherapy as soon as Scott was stable enough to begin it.*******  We were warned of the usual side effects of chemotherapy [i.e., nausea, hair falling out, etc.]  We were told that Scott's first chemotherapy treatment would be especially difficult because, among other things, chemotherapy [consisting of very toxic drugs which hopefully would destroy malignant cells] required hydration or the administration of large amounts of fluids, the very opposite of restricted fluids which was often necessary for Scott because of his messed up fluid and electrolyte balances, caused by a condition called "diabetes insipidus," resulting from the brain surgery in the hypothalamic region

As early as 1977, Rena and I had come to an understanding with Scott with respect to sharing the responsibility for Scott's care.  Although we had both remained with him 24 hours a day during his first hospital admission in April, 1977, which lasted five weeks, we agreed that there would always be at least one of us with him at the hospital at all times.  Of course there were times when that one of us was not permitted immediately along side of him [i.e., during surgery or radiological procedures or at certain times when Scott was in the ICU].  But, during the eleven years of Scott's illness, we religiously followed this practice of always having at least one of us either at his bedside or near him during a hospitalization.  Only during the last weeks before his passing, when he was in a coma, did we both go home late at night after an all day hospital bedside vigil and at least one of us would come back early the next morning to be joined by the other later in the day

Also, Rena and I worked out a division of responsibility so that for example, in a crisis such as a sudden emergency hospital admission or at the start of a new form of treatment [i.e., radiotherapy or chemotherapy] I would initially accompany Scott to the hospital or to the first treatment and then Rena would take over later.  This system worked out well and we referred to ourselves as David, the starting pitcher and Rena, the relief pitcher.  We had noticed even before Scott became ill that he appreciated having me with him when experiencing something new like Dalton School admission interviews but preferred Rena's company over extended periods of time.  Each of us had our own special relationship with him.  Dad calmed him and gave him strength in moments of crisis and great anxiety and Mom and he enjoyed endless hours of story telling, reading together, singing******** and speaking French.

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