JANUARY, 1986

PRESSURE AGAIN - BRAIN SHUNT SURGERY

[SCOTT'S THIRD HOSPITALIZATION]

  When we got back to New York in January, 1986, I took Scott for a regular eye checkup and the Doctor did not report any abnormality.  We were pleased since based upon our past experience, we assumed that if there was any sign of intercranial pressure, the routine eye examination would pick up "papilledema."  The following week, Scott was scheduled for his annual neurological examination by Dr. Gold.  As we drove to Dr. Gold's office at the Neurological Institute, all of us were in a good mood.  After all, Scott would be seeing his friend, Dr. Gold, with whom he had become quite attached, especially when it was just for a routine visit or at a social occasion.  Besides, it would be an excuse to go to Wendy's on Broadway near the hospital for his favorite hamburgers and french fries.  Although we were aware of the lower back pain from time to time, Scott seemed to have learned to live with it and he wasn't experiencing any headaches or throwing up.  The brain lesions had been there for at least a year and didn't seem to be causing any trouble.  There was simply no reason that we were then aware of that should cast any particular gloom on this visit.  Scott was very cheerful and talkative as he entered Dr. Gold's office.  It was as if he were there to get a routine medical examination for camp or before taking a trip.  When the examination was over, Scott, still cheerful, left to continue drawing his cartoons and Rena and I went in to meet privately with Dr. Gold for consultation, as we customarily did.  He seemed troubled and groping for what to say.  The first words of Dr. Gold I recall vividly.  They were unexpected and they hit me like a ton of bricks.  Dr. Gold said "I see pressure."  I knew what he meant immediately.  He had looked into Scott's eyes and observed fuzzy disks, signifying "papilledema" or increased intercranial pressure.  I couldn't believe it.  There had been no warning.  As far as I know, there had been no headaches or vomiting episodes and only a week before, Scott had been seen by the eye doctor with no report of any problem.  To this day I shiver when I am reminded of this office visit.  Increased intercranial pressure in 1986 meant one thing to me and one thing only.  The dreaded malignant tumor in Scott's brain had regrown and the ball game was over.  We thought we had it made and we had lost.  In between tears and gloom, I reminded Dr. Gold that Scott had been to the eye doctor only the week before and he hadn't detected any pressure.  How could it be?  Dr. Gold got the eye doctor on the telephone and soon we were on our way to his office in midtown Manhattan for another eye examination.  Scott knew that something was up only because of reading our faces and not because of any symptoms of his own.  This time the eye doctor confirmed "papilledema."  The next morning we took Scott to North Shore Hospital for additional "MRI" scans which once again, showed little change in the brain lesions except that now the ventricles were enlarged, confirming the increased intercranial pressure.  I remember learning about the explosion of the space shuttle "Challenger" on the car radio as we drove Scott to the hospital.  Before the day was over, Scott was back in the dreaded Hospital.  Scott was admitted to the ICU at Neurological Institute on January 28, 1986 and the brain shunt surgery that originally was to be performed on him almost nine years before in April 1977, was done.  The Goldstein family was not exactly a happy lot in January, 1986.  In fact, we "celebrated" Rena's birthday on January 29, 1986 in the ICU at Neurological Institute, while Scott was recuperating from the brain shunt surgery.  On a cheerier note however, Scott healed quickly and we left the hospital on February 6, 1986, about nine days later.  

How he had learned to hate the dreaded hospital.  Yet Scott was a very special young man.  As much as he despised being in the hospital, he also met many children there, some less fortunate than he and he was always concerned about their plight, not that he didn't have enough to worry about concerning his own.          An anecdote comes to mind to illustrate Scott's concern for others.  Scott had recently been released from the hospital after the brain shunt surgery.  He had already been conditioned to hate hospitals.  The mere words, "We have to go to the hospital," would send him into a tailspin of fear and despair.  Yet he knew that it was necessary to go for medical checkups from time to time.  When a checkup would end and we asked Scott whether he wanted to make a social call at Babies Hospital, he would usually say emphatically, "No, let's go home."  

On one very cold and windy March day, a Saturday afternoon, Scott and I drove over to one of his favorite toy stores on Madison Avenue.  How he loved them.  It seems like just the other day that we were in that toy store on Madison Avenue.  Scott needed a wrestling figure to add to his growing collection of wrestling figures.  

That afternoon, I was puzzled when Scott selected two "Junkyard Dog" wrestling figures and told him to put one back.  He persisted in purchasing both with his own traveler's checks.  His silent insistence prompted me to go along with him at least until I discovered what he was up to.  He couldn't have purchased the extra one for his mother, as much as he always had Mom on his mind when buying presents.  Those who know Rena know that professional wrestling is not one of her favorite spectator sports.  Maybe he bought it for me - but it wasn't my birthday, and Father's Day was still several months away.   He certainly knew how to pique my curiosity.  

When we walked to the car, Scotty surprised me by curtly directing me to drive north.  My puzzlement continued, but then I suddenly knew, but kept silent.  Soon we pulled up in front of the Babies Hospital as the Columbia-Presbyterian Medical Center at 168th Street & Broadway.  We both walked past the security guard, who recognized us and waved us on. 

Scott pushed the 11 button in the elevator, and shortly we were at the nursing station of Babies 11 North.  One of the nurses greeted Scott with a friendly but hesitating, "Hi Scott."  Surprised to see us, she inquired whether Scott was being admitted.  She had no record of a scheduled admission, and Scott looked too cheerful to explain an emergency admission.  Besides, he wasn't in the habit of just dropping by to say hello.  Other doctors and nurses also gathered around to greet him.  Scott soon put everyone at ease and explained that this was just a social call and that he was there to visit his former roommate Chris, a young teenager, who was soon to die from a brain tumor.

Chris, with his grandmother in attendance, was asleep when we arrived. The nurse and I stood back and watched.  Scott whispered, "Chris, it's your friend, Scott," placing Junk Yard Dog in his hand.  Chris gripped it weakly, smiled, mouthing the words, "Junk Yard Dog," and went back to sleep with a smile on his face.  I was so proud of Scott that day.  He had overcome his fear of the dreaded hospital in order to bring some joy to a very ill youngster whom he hardly knew.  

To our pleasant surprise, Scott adapted well to the new plastic hardware* running from his brain to his intestine.  He began to refer to himself as "tubehead" in signed notes telling us that he had taken his pills.  It seems that after brain surgery, for prophylactic purposes to prevent seizures, Scott had to take maintenance doses of anti-convulsant Dilantin pills with his breakfast and before going to sleep.  If we were out for the evening and Scott was asleep when we came home, we would wake him, to his great annoyance, to inquire whether he had taken his pills.  One night, Scott politely suggested that he could avoid being awakened by leaving us a note instead, telling us that he had taken his evening Dilantin pill.  These notes became quite elaborate and funny and to this day are amusing to glance at.  In these notes, Scott would combine his love for drawing cartoons  together with his growing knowledge of the French, Greek, Latin, Spanish and Hebrew languages and an ability to write in code.  Thus, on any particular night, it would take us as long to decipher Scott's note as it did for him to prepare it.  All the notes however were always signed "Tubehead".  

Soon Scott was back to school and life once again returned to normal.  Of course, we could not be unmindful of the uncertainty of the future and we spent many a sleepless night wondering when the next shoe would fall.  I must say however that during all of Scott's illness, until the very last day, Rena never abandoned her hope that Scott had been cured.  No matter what dismal sign or symptom came to pass, she consistently thought and spoke only in terms of cure rather than a gradually worsening condition.

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*  the brain shunt