MAY, 1987

MORE CHEMOTHERAPY

  In early May, 1987, Scott went back into the hospital for two days for his second chemotherapy treatment.  Rena accompanied him this time, armed with numerous tape recordings of his favorite singers, especially Neil Sedaka.  Scott made the mistake of eating  breakfast before the start of the treatment and it didn't stay with him very long.  This time however, Scott was not in a coma, as during his first chemotherapy treatment, and all things being equal, he tolerated it fairly well.  He had been told and we all believed that this treatment would make him well again.  Rena especially was hopeful.  She reasoned that the radiotherapy almost did it in 1977 and the chemotherapy would do what the radiotherapy hadn't accomplished.

JUNE, 1987

ANOTHER BRAIN SHUNT REVISION

Scott was home the rest of the month of May, 1987 but went back to the hospital in early June for his third chemotherapy treatment and a shunt revision, which was performed on June 5, 1987 and left the hospital five days later on June 10, 1987; but not without having a second allergic reaction to vancromyicin on June 8, 1987. 

THE SUMMER OF 1987

  SCOTT SPENDS MOST OF THE SUMMER OF 1987 IN THE HOSPITAL 

SCOTT HAS SEIZURE ACTIVITY

   

Only four days later, on Sunday, June 14, 1987, I was in my office, meeting with clients, when I got an urgent call from Rena and the nurse, informing me that Scott was having seizure activity, which was described to me as some slight twitching of his eyelid and some movement of his arm.  The last thing he said before going into seizures was:  "I'm dying."  

I cut our meeting short immediately and raced home.  After speaking to Dr. Gold by telephone, we decided to transport Scott to the hospital by car.   Scott sat in the back with Rena and the nurse, and I drove.  Along the way we picked up a police escort and made it from our home at 78th Street and Third Avenue to Columbia Presbyterian Hospital at 168th Street and Broadway, in less than twenty minutes.  Scott was placed in the NIICU overnight and was transferred over to Babies Hospital the next day.  Somehow, he recovered swiftly because on June 15, 1987, Scott made me feel good when he said "Dad, I see you."  Soon he was reading a TV Guide, searching for his favorite program.  It seems that Scott's Dilantin [the anti-convulsant drug] level had become dangerously low at home because neither we nor the private duty nurses realized that Scott was not holding down his medicine in between bouts of nausea and diarrhea.  The next day, June 16, 1987, Scott was depressed.  I was at my office talking to Scott on the telephone in his hospital room and he startled me by suddenly saying:  "I don't want to die."  

On June 17, 18, 1987, Scott was still depressed, refused to eat or drink and even refused to get on the telephone to talk to me.  Later that day, he had additional seizure activity and was transferred back to the ICU and on June 19, 1987, he had a broviac catheter surgically inserted into a major blood vessel⁴¹ and after recuperation, and receiving a blood transfusion of Rena's blood on July 3, 1987, Scott was discharged and went home on July 4, 1987.

I recall one harrowing experience that occurred during this admission.  On Friday, June 26, 1987, Scott was transported from his room in Babies Hospital to the operating room at the Neurological Institute for internalization of his shunt.  As usual, the trip was through the underground tunnel which is dirty, drafty and without communication facilities.  Since Scott's brain shunt had been externalized, it was attached by a long sterile plastic tubing hanging on a pole.  As we wheeled Scott on the stretcher, the private duty nurse followed, pushing a rolling pole to which the shunt bag was attached.  The stretcher and the pole were connected by the long sterile plastic tubing, making a temporarily closed system running from Scott's brain to the bag.  As we approached a door, the nurse turned to hold the door, but the stretcher kept going, causing the sterile plastic tube to break near Scott's head.  I was frantic for fear that Scott was now very susceptible to infection, especially since we would be traveling through the underground tunnel which was very dirty.  As it turned out, we got to the operating room within minutes and the neurosurgeons tied off the tube which was replaced during the surgery.  This time, the lower end of the shunt was placed in Scott's chest [i.e., in his plural cavity] because the doctors realized that it wasn't working very well in his intestine.  They told me later that if this mishap had to happen, it couldn't have happened at a better time, immediately before scheduled surgery, when the damage could be rectified quickly before germs could enter the system and find their way up to Scott's brain. 

JULY, 1987

SCOTT HAS SEIZURE ACTIVITY AGAIN AND IS HOSPITALIZED

Not so long afterwards, Scott had been home only a short while after discharge from the hospital on July 4, 1987 when I got a call at the office on Wednesday, July 15, 1987, from the nurse at home and our maid Mandy* that Scott was having seizure activity again.  Rena was not home at the time and couldn't be contacted by telephone.**  On my way out the door, I called 911 for an ambulance and arrived home, less than two miles away, by taxicab about a half hour later [midtown traffic was horrible].  The police were there but the NYC ambulance had not arrived as yet and Scott was not conscious.  We were all rather frantic until it came some minutes later.  The attendants immediately began to administer oxygen and anti-convulsant medication and we had a long argument concerning whether Scott would be taken to the nearest NYC municipal hospital, as required by their regulations.  Dr. Gold was on the telephone, pleading with them to transport Scott to Columbia Presbyterian Medical Center where he and Scott's other doctors were standing by and where his medical history was known.  Besides, a municipal hospital is simply not equipped to deal with a long term young neurological patient as well as the Neurological Institute and the Babies Hospital but the ambulance attendants were sticking to their guns.  Finally I got hold of a doctor in charge of their trauma center and he authorized the transport of Scott to Columbia Presbyterian.  While this was going on, Rena returned home and saw the ambulance in front of the apartment house where we live without realizing that it was there for Scott.  She never dreamed that he was in trouble because he was in good shape when she left the apartment earlier to run an errand.  It was only when she got off the elevator and the ambulance crew followed her to our front door that she realized that they were there for Scott.  Needless to say, she was frantic with fear and anxiety when she raced inside to be confronted with a sea of uniforms and police.  As was our customary practice in a crisis, we left her home and I accompanied Scott in the ambulance to the hospital.  We knew that if Scott survived this emergency, there would be plenty of time for Rena to be with him at the hospital.  

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