THE DEATH SENTENCE 

Now we had to bite the bullet.  Soon I met with Dr. Chang* and Dr. Gold.  Rena couldn't face them at this time although she was to later gallantly accompany Scott for all of his radiotherapy treatments after the first session which just Scott and I attended.  I was told that it was now reasonably certain that Scott had malignant tumor disease throughout his central nervous system, probably of the astrocytoma or ependymoma type and that a full course of radiotherapy to his brain and spine should be started immediately as a "palliative"** measure but not as a cure.  I was told in July, 1977 that even with the radiotherapy treatment, Scott's chance for five year survival was less than 25% and that based upon their many years of experience and knowledge in the field, in all probability, Scott, our only child, would live no more than six months.  The Goldstein family was at a new low ebb.  A death sentence had been pronounced upon Scott and he would never reach his sixth birthday [Scott in fact reached his fifteenth birthday].  In July, 1977, I was besides myself with every possible negative emotion you can imagine - despair, fear, anger, hurt - just to mention a few.  And to add to the problem, Scott's fifth birthday on July 21, 1977 was just days away.  Would this be his last birthday?  I couldn't get myself to share the horrible prognosis with Rena although she knew and reluctantly accepted the fact that Scott was about to start radiotherapy treatments.

Rena didn't want to make a party and I did.  Not that either of us was in the party making mood.  We were both so sad but I still hadn't mentioned the word "palliative" [how I hated that word] or the horrible prognosis that Scott had only six months to live.  As far as Rena was concerned, the radiotherapy was necessary to save Scott's life and I wasn't going to deprive her of the hope that kept her going.  I wanted the party because I silently thought to myself it was going to be Scott's last birthday party.  Scott had his fifth birthday party in the air conditioned hall between Babies 11 North and South.  Babies 11 North wasn't air-conditioned in those days and July 21, 1977 hit a record 104 degrees.  Telephone calls were made and many of Scott's classmates came in from summer camps in Maine and vacation homes in the Hamptons.  My cousin Leba is married to Neil Sedaka, a popular singer and they came, a piano was wheeled up to the 11th floor and Neil sang for four hours to approximately 400 patients*** nurses and doctors.  Frozen custard was served in stool cups and the kids all had a ball.  Little did we know then that Scott would have nine more birthday parties.

RADIOTHERAPY  

I took Scott to his first radiotherapy session at Columbia Presbyterian Hospital while he was still a patient.  Rena remained in Scott's room.  It was very depressing there.  Most of the patients were elderly in various stages of physical deterioration.  Scott was the only child patient there.  The staff was very kind and Scott didn't even know when the treatment had ended.  He remarked however that it didn't hurt.  We checked out of the hospital with the understanding that Rena would accompany Scott as an outpatient for the next thirty nine treatments.  

On the way home from Scott's second radiotherapy treatment [his first as an outpatient] the taxicab in which Rena and Scott were riding, was hit from behind by a bus and a police car rushed them back to the hospital.  Other than a few scrapes and a good scare, there was no damage to either of them.  When the Sedakas heard of this incident however, Neil Sedaka insisted that his limousine and chauffeur be used to drive Scott and Rena back and forth from our home to the hospital for the rest of the radiotherapy treatments, which were given during the summer of 1977.  

The rest of the summer was relatively uneventful.  Scott enjoyed travelling by limousine every day.  He watched cartoons on the color TV in the limo and drank cokes and ginger ale from its small refrigerator.  The driver was especially kind to him.  Scott had temporarily become very obese from his huge appetite prompted by the steroid medicine and could hardly walk.  The chauffeur would actually carry Scott in his arms in and out of the limo.  While he waited for Scott and Rena to come out of the hospital, he would draw maps of NYC streets for Scott.  I attribute this experience to Scott's love for maps which he enjoyed as long as he could see.

The radiotherapy treatments didn't hurt except for an occasional burn in his mouth akin to a burn from eating hot food.  The worst part of the radiotherapy treatments for Scott were the routine finger sticks for blood samples to check his blood counts.  If the count was below a certain level on a particular day, Scott's treatment would have to be postponed for another day.  

After thirty-nine radiotherapy treatments, the fortieth and last was cancelled because Dr. Chang felt that Scott had sufficient rads and could not safely tolerate any more.  

SEPTEMBER, 1977
BACK TO SCHOOL

  The summer was over and a new school year was starting and we had to address the issue of Scott's continued schooling.  This was an extremely difficult issue at first since I alone had been told that Scott had only six months to live.  I didn't share this horrible prognosis with Rena until many years later.  As far as Rena was concerned, the radiotherapy treatments had cured Scott and there was no reason not to send Scott to school provided a special program could be worked out for his needs.  He was still quite obese and had lost his hair and he tired easily besides not getting around very swiftly.  We met with Marion Plexico, the Director of the Dalton First Program and she couldn't have been nicer.  It was arranged for Scott to start going back to school slowly and gradually, ten minutes the first day, twenty minutes the second day and so on.  The school even assigned one person, who had volunteered, to accompany Scott during the school day.  She was especially nurturing and caring, having recently undergone surgery for malignancy herself.  

At first, Scott went for neurological checkups to Dr. Gold every ten days, then every two weeks, then every month, then every three months, then every six months and eventually once annually.  The headaches and vomiting went away, the hair grew back, Scott thinned down and regained his normal walking and running gait.  

When six months had gone by and his condition seemed to improve, I mentioned this to Dr. Gold and asked whether maybe the original diagnosis had been wrong.  He never wavered from the diagnosis of tumor disease but always maintained a wait and see attitude.  In other words. if the checkup was good and many of them were, don't question it, just enjoy him.  

I should mention at this point that while we were in the hospital in April, May and July, 1977, in a continuing effort to cheer up Rena's spirits, Dr. Gold, a robust man who obviously enjoyed good food, would often tell Rena that he had heard what a wonderful cook she was and that he and his wife Sandra would be pleased to enjoy her hospitality and cuisine.  Rena's usual response would be "Give me a healthy child and I will be glad to make a feast for you and the Mrs."  There came a time in early 1978 when Rena did invite Dr. Gold and Sandra to our home for dinner and what a marvelous dinner it was.  By this time, Scott was well, attending school full time without any restrictions as to physical activities and as far as Rena was concerned, Dr. Gold, with the help of radiotherapy, had given us a healthy child.

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* Chief of Neuroradiotherapy at Columbia Presbyterian Medical Center.