SUMMER OF 1978

SCOTT GOES TO ISRAEL 

We did go to Israel in the summer of 1978 with Scott for my nephew Jon's bar mitzvah.  I remember vividly that on the very hot day of our arrival, after we had been driven from the airport to our hotel in Jerusalem, I immediately put Scott on my shoulders and walked over to the Wailing Wall.  All that I had read about the emotional impact of it on jews did not prepare me for my own reaction.  We walked up to the Wall and I wrote a short prayer for Scott's continued good health on a small piece of paper, folded it and placed it in a crack in the wall.  Then I broke down and cried uncontrollably for several minutes.  Scotty asked "Daddy, why are you crying?" and I replied "Because I am so very happy to be here with you." 

One evening, Dr. Steve Rothman,* the Chief of Neuroradiology at Yale and my brother Bill's friend, came over to join Bill and Madeline for dinner.  He was then at the Hadassah Hospital in Israel, on an exchange program.  Bill's kids and Scotty [then almost 6 years old] were having a grand old time, running around the lobby of the hotel.  Dr. Rothman asked Bill which of the kids was Scott.  When Bill pointed out Scotty, scampering swiftly after his own children, Dr. Rothman was amazed.  He couldn't believe that Scott was the same kid whose enlarged ventricles he had observed on the CAT scans in April, 1977 and who he had been told was given only six months to live at that time. 

He lived longer than that all right.  In the summer of 1978, he travelled through, Jerusalem, Tel Aviv, Masada, kibbutzes, Haifa and then on to Paris, France where, among other things, he enjoyed climbing the Eiffel Tower; playing with computers and Legos in Galeries Lafayette; and eating breakfast in bed at the Plaza Athene Hotel.  In later years, Scott went sight seeing in the Vatican; toured Pompeii; watched the boats in the Mediterranean on the Amalfi coast of Italy,** eat pizza in Pizza, Italy; saw the water falls of Iguazo in South America, where Brazil, Argentina, Paraguay and Uruguay meet; had a surprise birthday party, entertained by a Portuguese speaking magician, in Rio De Janeiro, Brazil; eat beef in Buenos Aires, Argentina; watched New Years Eve fireworks in Caracas, Venezuela;  enjoyed the beautiful beaches of Pont Del Este, Uruguay; drove through "tree tunnels"*** on country roads in France;  shopped in the stores of Martinique and Barbados; fed the big sea turtles in Cancun, Mexico; and enjoyed Disney World in California. 

1977-1984

THE GOOD YEARS - SCOTT WAS ASYMPTOMATIC

As the years went by, Scott grew, his hair grew back, somewhat darker than before and his voice changed from the high soprano voice of a child to the deeper sound of a young man.  Other than going for annual neurological checkups, he lived the normal life of a growing youngster in Manhattan.  He attended the Dalton School without restrictions upon his physical activities.  Gradually, he and his classmates became reacquainted and soon he and his friends were exchanging play dates at their respective homes although we were always prodding him to socialize with kids more than he did.  He seemed to be more comfortable among adults. On some weekends, when children's birthday and later bar mitzvah parties and other activities didn't keep him or all of us in the city we went to the country or to Long Island to visit Scott's grandparents.  On school vacations, and in the summer when Scott wasn't attending the Dalton summer camp in the city, we traveled together as a family to many countries**** around the world and to Florida and California.  

In the early 1980s, during one of our visits to the Columbia Presbyterian Hospital for a routine checkup for Scott, I saw a poster advertising a meeting of a newly formed pilot "VOLUNTEER PARENT SUPPORT GROUP" at Babies Hospital.  The purpose of the group was to offer practical and emotional support to all parents who have had or then presently had a child staying at the Babies Hospital.  

I attended one of the next meetings one night, and although Scott was not ill at the time, was pleased to add to the meeting and to instill some hope to the parents present by telling how Scott had been declared incurable in 1977 and was still around to tell about it.  Later, as an attorney, on November 22, 1982, I incorporated Parents For Parents, Inc., as a New York Not-For-Profit corporation and can report that they have expanded their organization to service a number of other hospitals in the metropolitan area.  

Scott loved to play games whether it was Monopoly or Legos.  One day in 1980, during a trip to the NYU Law School Bookstore to pick up a textbook for my law offices, I saw a game that I simply couldn't resist.  I knew immediately that Scott would love it, even though he was then only eight years old.  It was called "Trial Lawyer" and it is best described as a federal criminal trial in the Monopoly format.  We would sit for hours at the dining room table after dinner at home playing it until I was weary.  Scott never wanted to pack up the game.  He never had enough of it.  He would roll the dice and laugh loudly if the throw of the dice placed his figure on a favorite location on the board, such as one which awarded him a large money fine, to be paid by his Dad.  At other times, his figure would land on a location, requiring him to select a card with a legal question to be answered.  He never ceased to amaze me with the accuracy of his answers.  One day, when I praised him for a correct answer, he said that he wanted to be my law partner when he grew up and that we would call our office "NY LAW".  To this day, I treasure a large hand drawn piece of paper, done by Scott on "12/25/80," probably the same day Scott opened his present of "Trial Lawyer" and immediately began to examine its contents. It reads as follows:  

"5-6 Amendment
[You are under arrest] 
You have the right to remain quiet, Anything you say can be used  
against you in the court of law.  
You have the right to get a lawyer  
If you can't afford a lawyer, I will  
be hired for you.  

Scott Goldstein  12/25/80"

By April, 1982, five years had gone by since the original diagnosis of Scott's illness in 1977, he was asymptomatic and we were starting to wonder whether he had been cured or whether the original diagnosis had been mistaken.  As is often the case, well meaning friends and relatives gratuitously shared as many varied opinions with us as one can imagine.  Every once and a while, but rarely, Scott would throw up or have a passing headache and we would be in a tizzy until reassured by either a sore throat or fever that the culprit was a routine virus or some other common non-neurological cause.

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