MARCH 29, 1988 - APRIL 16, 1988

SCOTT'S LAST DAYS  

The period between March 29 and April 16, 1988, when Scott passed away was a nightmare and very sad.  Although in a coma and presumably without pain, there were times when Scott would be moved and he would grimace as if in pain and even make noises sounding like reaction to pain.  He was very weak and all of his systems were rapidly failing.  He would often stop breathing and his heart would stop beating for several seconds, only to be revived by the trusty old "ambo bag" and perhaps heart massage.  It happened so often [numerous times on a single shift] that when Scott's electronic monitor would sound, the nurses would often wait several seconds before stating to revive Scott since his heart and his breathing would often begin almost spontaneously.  Of course, towards the end, his blood pressure was artificially supported by powerful drugs referred to as "vasopressors."  In addition, various infectious processes were going on and Scott was constantly under the watchful eyes of the doctors from Infectious Diseases, who gallantly tried a variety of medications, some of which were new and experimental.⁵³  Scott was getting blood transfusions at this time and virtually all of his systems were breaking down.  

Towards the end, Rena and I would leave the hospital at around midnight only to call in almost every hour from home to see how he was doing.  The nursing staff at the ninth floor Pediatric ICU at Babies Hospital could not have been nicer and more compassionate.  After we had been treated, rather roughly we thought, on March 28-29, 1988, by the two doctors in charge of the ICU, the charge nurse came to me and apologized profusely and told me that her nursing staff unanimously did not agree with the way Rena and I had been approached by them with respect to the issue of whether or not to withdraw life support for Scott.  

I felt so helpless and out of control.  I tried to do little things such as clean Scott's eyes often with sterile saline solution and manipulate his arms and legs in "range of motion" exercises.  Rena and I were almost constantly by Scott's bedside during the last few weeks although we still maintained some hope [Rena more than I] that Scott would come out of this coma as he had done before, come off the respirator and leave the ICU.  My recollection about having hope is refreshed by looking at my office diary during this time period and noticing that I went to Court several times for clients, including Friday, April 15, 1988, the day before Scott's death.  Surely, if I had given up hope at that late date and thought that Scott would die the very next day, I would not have been away from his bedside.

APRIL 16, 1988

THE DAY SCOTT DIED 

On Saturday morning, April 16, 1988, the day of Scott's death, we were awakened early at about 5:30 A.M. by one of the doctors in the ICU and he told us that Scott was in bad shape and that we better come up to the hospital.  This was not the first time that we had raced back to the hospital at an odd hour and it took us only about twenty five minutes to dress and get up there at this early hour.  At the ICU, we were told that Scott's heart had stopped several times during the night and that his blood pressure had gone down.  His condition had taken a turn for the worse.  We sat at Scott's bedside and held his hands.  Rena played tape recorded music for him.  At 9:03 A.M., Scott's heart stopped beating and Rena and I were quickly ushered out of the ICU to wait outside alone while the doctors and nurses worked on Scott.  It was so hard for us to leave.  We kept looking back and we were both crying.  This was our child, our flesh and blood and total strangers were separating us from him when he needed us the most, not that there was anything we could do.  This was the first time that Rena and I discussed the inevitability of Scott's death.  We both assumed that we had seen him alive for the last time.  We wailed to each other as we talked about not touching him again; and not ever hearing his voice or kissing him again.  The only consoling thing that I could think of was to remind Rena that at least he was now at peace; no more pain; no more anxiety; no more operations; no more doctors and nurses bothering him.  Then Dr. Rick Trifiletti, a rather robust pediatric resident came through the ICU door.  He had been especially kind and compassionate to us throughout Scott's hospitalizations.  He never lied to us or gave us false hope.  What he did do however was always to talk about the positive things while keeping his own concerns to himself.  Dr. Trifiletti was smiling, with tears in his eyes, if you can imagine this incongruous scene.  He hugged Rena warmly and we knew that once again, heroic measures had been taken to save Scott's life.  And Scott was still fighting to stay alive.  We raced inside the ICU and hugged and kissed Scott as much as we could without pulling apart all of his lines.  I resumed my ritual of cleaning his eyes and Rena changed the music tape.  We were back at our vigil.  The same thing happened several times that morning.  Scott's heart would stop beating, we would be ushered out of the ICU and brought back after he was revived.  Each time we thought it was the last only to learn otherwise.  

Finally, at approximately 12:41 P.M. on Saturday, April 16, 1988, notwithstanding the heroic efforts of Dr. Trifiletti and the other doctors and nurses in the ICU, Scott finally succumbed to his rampant malignant central nervous system tumor disease after a gallant and courageous fight which lasted more than eleven years. 

This was the moment we had been dreading for more than four thousand days.  Although we had a lot of time to think about it and to prepare for it, I must say that you never prepare for the death of your only child.  By this I mean in an emotional sense.  Sure he had started to make preparations.  My notes indicate that on April 7, 1988, I jotted down the names and telephone numbers of some of Scott's friends teachers and doctors who I wanted to call and request to speak at Scott's funeral.  I asked the nurses if Rena and I could spend some time briefly with Scott before they took him away.  I had seen this happen before in the ICU when other children died, virtually right in front of my eyes.  The parents would come in behind closed curtains, spend a couple of moments in private with their child and leave.  On more than one occasion, Rena and I would be there to console them, hoping against the worst of odds, that we would not face a similar fate.  

Soon, we were at Scott's bedside.  He looked so much at peace at last.  Several of the nurses and doctors joined us from time to time on their breaks.  We were in no hurry to leave and no one gave us the slightest indication that we had to leave.  Shortly, the Sedakas and my niece Sarah joined us at Scott's bedside too.  I had started to make some telephone notifications from the charge nurse's office.  We held Scott's hands and kissed him and Rena and Neil sang to him.  The hospital administrator came by, rather abruptly with the man from the funeral home but the nurses chased them away.  I would never believe it if I wasn't there myself with Rena.  We did not leave Scott until 7:05 P.M., more than seven hours after his last breath.    

AFTERWARDS

The mahogany casket, bearing Scott, was placed before the ark at Temple Emanu-El, on Monday morning, April 18, 1988, just 1,038 days after Scott, in life, so eloquently performed his bar mitzvah from the same place. Rena and I rode to the funeral service, accompanied by Neil and Leba Sedaka, who had been so specially supportive, throughout Scott's long illness.  We found out later that the driver who drove us from our home to Temple Emanu-El, had to be replaced for the drive to the Cemetery and back, because he had become overwhelmed with emotion, during the short drive to the Temple.  Rabbis Sobel, Chapin and Posner officiated with grace, as they had after Scott's birth and at his bar mitzvah.  Passerby were overheard to exclaim "Some dignitary must have died."  Hundreds of people crowded into the main sanctuary, which was opened specially for the funeral service.  Scott's classmates came by chartered school buses. 

After a beautiful lament by Cantor Nemerson, Rabbi Chapin, who had tutored Scott for his Bar Mitzvah, gave a fitting prayer and some personalized comments about his former student, Scott, the "young philosopher," who simultaneously charmed, amused and taught his Rabbis.  He said they became in awe of him as "he asked the unanswerable for which there were no simple answers". 

 Arthur Roses, Scott's long time school chum was the first lay speaker and he set the tone for all of the adults who followed him.  He was eloquent yet his words were simple but carefully chosen.  He made it quite clear that we were gathered to celebrate Scott's life rather than to mourn his death.  What courage it took for fifteen year old Arthur to be the lead speaker at the funeral of his best friend Scott, as he spoke of Scott's "warmth, humor, strength, courage and friendship."  

David Arnold, the director of the Dalton high School and one of Scott's favorite teachers was next.  He talked about how Scott would come by and cheer him up with humor when he felt overwhelmed by the problems of the moment and how Scott would have enjoyed watching his teacher squirm under the pressure of giving these remarks.  Quoted below are his moving remarks spoken at Scott's funeral, entitled:  

"A Celebration of My Friend:  The Pupil as Teacher"

      "Well Scottie,  

You honor me once again by letting me be a part of this special occasion in celebration of the life you so gloriously led among us, just as you honored me time and again by giving me the opportunity to get to know you, if only for a brief time.

 

Here we all are - your many friends, your beloved parents and family, and you, just as you probably envisioned it with that wry, elfin, bemused but ever so positive outlook of yours on the world.  Somehow, as I committed myself to this writing, I could not get it out of my head how much fun you'd be having watching your old principal and history teacher sweat out this assignment, a formal speech in your honor.  My only hope is that my effort will pass muster under your watchful, scrutinizing eye, just as you were able to do so often and with such aplomb under the vigilant eye of life.  

 

No, you honor me once again, young man, for your having the patience and forbearance to hear me out as you always did.  But in so doing, you have enabled me, through your ever-present image and spirit, to rejoice not only in the life you graced us with, but also in that universal experience with which we have all been blessed.  In that respect you are as much the consummate teacher as any of could every hope to be.  And taught us you did - so many lessons which we will never forget even as we try to make sense in our limited way of the meaning of our shared existences and that entity we call life.  

 

You taught us among other things how to care for big and small things alike.  You taught us how to laugh and take joy from the absurd and the sublime.  Would that I could conjure up just one of your many Saturday Night Live impressions to show you how well I learned about having fun even under the most trying of circumstances.  Your timing couldn't have been better.  You also taught us how to dream and have aspirations:  Your ability to hope and look to the future only inspired us to find more of a purposefulness in our own lives.  You also taught us what it means to be courageous and honest when confronting the vicissitudes of our lives and the challenges thrown our way on a daily basis. In fact, your courage was as boundless as your spirit.  You never shied away from all of these nor did you ask to.  Rather, you looked each one of these challenged squarely in the eye and reveled at your ability to triumph over them.  You did it through your spontaneity, your sense of playfulness, your wisdom, and your willingness to just be you.  How you taught us.  And I can still remember how you made a believer out of me in so many things from professional wrestling - how you would regale me with ringside stories of all the performers and tell me of their won-lost records and unique wrestling styles - to the fortunes of our baseball team.  Your wonderfully observant and curious eye never missed a detail, nor an opportunity to find the lighter side in all that you saw.  

 

Above all, you taught us how to love life and to make it into an art form - how to take each glorious moment and cherish it for what it was and would always be.  That perhaps was the most powerful lesson you taught us and one which we shall never forget.  

 

No, Scottie, I only knew you for a brief, shining moment, but the positive and sustained impact you made on me will stand the test of time as few other experiences have done.  My only hope is that in some small way I was able to reciprocate that timeless favor.  Would that I as a teacher could be so skilled and fortunate as to have been able to make a similar impact on you.  I wish but I doubt it.  

 

As James Boswell observed in his Life of Johnson:  'To my question, whether we might not fortify our minds for the approach of death, he answered in a passion, "No, sir, let it alone.  It matters not how a man dies, but how he lives."'  

 

You Scott, in the inimitable way you lived your life, made that axiom a reality and taught us all not about not the approach of death, but how to approach the art of life.  What a teacher you have been for all of us.    

With Love and Respect,    
David M. Arnold  
April 18, 1988"

  Then came Richard Grossman ["Mr. G" to Scott], Scott's Dalton Middle School science teacher and Director of the Dalton Summer Camp, who spoke of his very special relationship with his fallen student and counselor in training with "the angelic face" hidden by the Mets baseball cap.  He spoke of how proud Scott was to wear his Dalton Summer Camp "Staff Shirt" as he pushed the broom [with a tear in his eye] in the gym under the watchful eye of Dee Middleton - after all, he wasn't made out for this kind of labor. He brought Scott back to life for some fleeting moments as he repeated his daily salutation "Good morning Mr. G, how's the Mrs." - How Scott consoled him when his own mother passed away - How Scott delighted teachers and students alike with his imitation of Don Rickles at a Dalton School overnight weekend away - How Scott lingered in the morning on the street corner a half block from the summer day camp - anything to avoid swimming lessons.  What he did by illustration with these anecdotes was to demonstrate that Scott had learned to cope with life and eventually death, in a very special way, always with charm and respect for those he came in contact with.  He demonstrated that Scott simply coped with his own overwhelming problems by reaching out to all those around him.  He traded and negotiated kindness and caring as a commodity of life, which Mr. Grossman showed would be permanently engraved in his memory forever. 

Dr. Gold, Scott's pediatric neurologist for eleven years, spoke next, relating a number of memorable anecdotes, illustrating Scott's kindness, his humor, his love, his optimism and his courage.  He spoke of how Scott defied all medical knowledge and experience and how the prognosis for Scott was never valid, placing "Scott on loan to us for an extended period of time."  Dr. Gold spoke of his observations over eleven long years, of our family relationship, built on trust, love and unwavering hope and how he watched all three of us give strength to each other when one was weak so that the Goldstein family unit ["the whole being stronger than the parts"] was always sturdy and remained intact right up to the very end.  He spoke of how a Courtroom was transformed into a "downtown Neurological Institute" when he examined Scott in Court while testifying as a witness - and how the Pediatric ICU at Babies Hospital was transformed into a Passover Seder setting at Scott's bedside, replete with home cooked roast beef, matzo, gefilte fish, horse radish, prayer books and doctors and nurses [Jew and Gentile alike] wearing yarmulkes, all chanting the appropriate religious service in the midst of beeping electronic monitors and respirators.  He spoke of an animated and humorous Scott as a very special person, "long in love even if short in years," who had significantly changed his personal and professional life.  I will never forget Dr. Gold's concluding remarks.  He said "If love alone could have kept Scott alive, he would have lived forever." 

Scott's political "Boss," State Senator Roy Goodman followed with some touching remarks about his fallen "Building Captain."⁵⁴  He referred to his Churchillian personality, quoting Winston Churchill who said "Never, never, never give up."

Finally, Senior Rabbi Sobel, who had known Scott since birth, made the closing remarks and you could sense that this was a unique service for him as well as the other Rabbis.  Later, Rabbi Chapin told me that all three Rabbis, together with Cantor Nemerson, who sang beautifully at the service, were in tears, as they reminisced about Scott. 

Scott was buried in a Dalton baseball shirt and a Mets jacket, which had been given to him by his classmates during his illness.  We knew how he hated to wear a tie and jacket and we decided that now that he was at peace finally, lets not even disturb his spirit with the formality of dress.  

At his burial ceremony amidst the well kept green lawns and granite mausoleums at Temple Emanu-El's Beth El Cemetery in Queens, after Rabbi Chapin finished the traditional Jewish prayers, Neil Sedaka sang "My Friend."  It was a most poignant scene in the serene setting which Rena later described as Scotty's Jewish Pompeii.  

After the funeral, hoards of people came to our home for several days to make condolence calls and pay their respects.  Their were numerous friends, neighbors, relatives, school teachers and classmates there to comfort us.  Some of them brought copies of various obituaries which appeared in the NY Times and in a local newspaper, called Our Town.  It seems that Ed Kayatt, the Editor and Publisher of Our Town, was especially touched by Scott.  He got to know him during my 1981-82 political campaign and at several social functions later on.

The Our Town obituary which appeared in the April 24, 1988 weekly edition of Our Town, is worth quoting and it read as follows:  

         "In Memoriam Scott A. Goldstein 1972-1988

 

For 11 of his almost 16 years, Scott Goldstein battled against spinal cancer.  Despite countless operations and prolonged hospital stays, Scott's courage, intelligence, kindness and concern for others were an inspiration to his parents and to all who knew him.

 

Scott was a philosopher with wisdom beyond his young years.  Somehow he found the energy and strength to serve as manager of the baseball team at the Dalton School and to be avidly involved in politics as a building captain for Senator Roy Goodman and Congressman Bill Green.  Some of you may have seen the banner⁵⁵ at last September's Third Avenue Festival near his home on 78th street that recognized Scott for his brave fight.
 

Although nothing can console my friends David and his wife, Rena Goldstein in the loss of their only child, may they take comfort in the prayers and sympathy of their many friends and all who were touched by Scott's life. 

Ed Kayatt, Publisher  

Later, on May 31, 1988, a very touching Memorial Service for Scott was held at the Dalton School.  Like his funeral, it was very well attended.  It began with a film tribute prepared by his friend and Dalton schoolmate Jordan Rubin, which combined some trenchant edited videotaped scenes, showing Scott in real life [i.e., driving his racing car and at his bar mitzvah] with short filmed interviews of his friends and teachers.  Then tributes were given by Dalton Headmaster Gardner Dunnan, Dalton teachers LaZalia Richardson, Wayne Adamson, Susan Etess and John Beetar, Dalton Summer Camp Counselor Stefanie Grossman, Dalton classmates Daniel Zorn and Tarja Herz, his cousin, medical student Marc Michalsky, Dr. Peter Carmel, Scott's neurosurgeon for eleven years and Dr. Tom Starck, who was in charge of the Pediatric ICU during one of Scott's admissions; and finally yours truly, Scott's father, gave the closing tribute.  

Dalton Headmaster Gardner Dunnan briefly but effectively described the "extraordinary" young man Scott, who always conveyed the sense that he was enjoying the ride through life through his intelligence, his enthusiasm, his optimism, his compassionate friendship for others, his sense of humor, and his courage.  

Scott's ninth grade Dalton high school english teacher LaZalia Richardson read Scott's essay entitled "My Hero" and Alan Alda's September 18, 1986 reply to Scott, his hero, and remarked how in the short time she knew him, she was inspired by Scott, encouraged by his courage and made richer by having heard the sounds of his laughter in her classroom.  

Scott's former Dalton homeroom advisor Wayne Adamson spoke about how Scott was not just a student but would be particularly remembered by him as a very special friend who effectively comforted and helped him one cold dreary winter day when he was down in the dumps after returning from a school trip to discover that the family cat had died.  Mr. Adamson told how Scott sensed his emotional upset and turned him around and made him feel good during the rest of that day with a combination of well timed jokes, cartoons and even a hand drawn booklet of cartoon characters placed in his mailbox.  

Former Dalton Middle School Director Susan Etess spoke of her memories of Scott in his home, in the country and at school; of her adoration and appreciation of Scott who never lost his sense of humor despite a series of overwhelming adversities; of his memory and passion for numbers; and of his insatiable curiosity and questions about everything around him.  She read from an essay he wrote as one of her young students when he related that he liked hamburgers, pizza, french fries and school and disliked hospitals, bullies, and diets. 

Scott's French teacher and last home room advisor John Beetar, told about how Scott would come alive with enthusiasm when they spoke in French together, even when their French communications were in bedside visits in the hospital. 

Former Dalton Summer Camp Counselor Stefanie Grossman, the daughter of Scott's Dalton science teacher and Director of the Dalton Summer Camp, Richard Grossman, and now a post graduate child psychology student, told of how meaningful her relationship as Scott's summer camp counselor had been when she herself was a Dalton 10th grader and Scott was only eight or nine years of age.  She was so inspired by Scott in life, she used their relationship as the focal point of her college admission essay.  She told how Scott taught her what being an individual was all about from their summer experience together in teaching him how to swim; and how Scott's spirit of courage and determination would continue to guide her throughout her life.  

Scott's Dalton classmate Daniel Zorn spoke about how Scott learned to cope with adversity, symbolized by ignoring a class bully looking for a fight; how he always was laughing and joking with his classmates; and how he never imposed his illness on other people.  Danny Zorn closed his touching remarks by stating that Scott always tried to be as happy as he could be and that no illness could take that away from him.  

Tarja Herz, also one of Scott's Dalton classmates spoke of her long friendship with Scott and of many visits to him, both at home and at the hospital, during his illness.  She told of how her initial fear of what to expect, preceding the first visit, quickly changed to a warm session of exchanging jokes and school gossip.  Her remarks made it very obvious that the way Scott handled his illness had made a deep impression on her that would remain with her for a very long time.  

Then, his cousin, medical student Marc Michalsky, spoke: upon a theme of not what had been lost but what he had gained from Scott's life and their close relationship together; of Scott, the younger brother he never had; of how Scott helped him to grow up by constantly challenging him with difficult questions; of how his relationship with Scott profoundly influenced him and helped to shape his own life; of how Scott used humor against fear and how he deflected pain with questions.  Marc told of how Scott's courage, challenging spirit and will to live transformed his hospital room to a battlefield where acts of courage are ordinarily described.  

Soft-spoken Dr. Tom Starck, who was in charge of the Pediatric ICU during one of Scott's last admissions and one of the most compassionate human beings on this earth, after thanking us for permitting him to "nudge" himself into being a passover seder celebrant in the ICU and a speaker at the Memorial Service, spoke of the "sparky" character displayed by Scott, even when he was very ill.  He dispelled all notions that we had, of having been a bother or annoyance, at times, to the medical and nursing staff at Columbia Presbyterian Hospital, when he spoke, with obvious esteem and respect, for Scott's parents, who, he said, "moved heaven and earth to take care of Scott and bring life to their child".  

Finally, although he wasn't the last speaker at Scott's Memorial Service, I write last, but with great affection about Dr. Peter Carmel, Scott's neurosurgeon for eleven years, and his moving message at the service.  Dr. Carmel came into the darkened Dalton auditorium, with his wife, shortly after Jordan Rubin's video tape began and they were ushered to front row seats immediately in front of us.  While observing the film clips of Scott in real life [i.e., at his bar mitzvah and driving his racing car], Dr. Carmel began to sob and he never stopped sobbing during all of the remarks of the speakers ahead of him.  Frankly, I was surprised.  I simply was not prepared for nor did I expect him to cry.  During the entire eleven years I had known him, although he had always been especially kind and compassionate to all of us, I had always perceived him primarily in the roles of a cool neurosurgeon and Professor of Neurosurgery, who had conditioned himself, out of professional necessity, to a discipline of avoiding subjective emotional reactions, wherever possible.  I should have known otherwise.  He was a husband and a father too.  After all, here was a professional man who gave us his personal telephone numbers, both at his home and even at hotels when he was away and insisted that we call him at any hour of the day or night when ever we were concerned.  I can remember my brother Bill one day kidding him and saying "Dr. Carmel, I'm going to have you cashiered out of the neurosurgery union - you are too nice."

After introducing himself as the "Pierre Carmel" from one of Scott's little ditties related to him in the operating room just before surgery was to begin one day, he told of how typical it was for Scott to relate a joke or a pun⁵⁶ to the doctors before surgery, to make them feel better and keep their enthusiasm up.  He said that it was difficult for the doctors to care for Scott.  Then, with some hesitancy, while he composed himself for what was to follow, he said very softly:

          "It was difficult for me to do operations  on a boy who I loved."

  Dr. Carmel finished his remarks by sharing a troubling question with the audience at the memorial service.  He said that his children, including his son David, who had asked the question just that evening at dinner, had often asked him whether Scott knew he was dying.  Dr. Carmel although not professing to know the answer, said that what he did know was that Scott's thinking was "I think, I know, therefore I am alive" and that so long as there was any vital energy in him, he knew that he was alive. 

At the end of the Memorial Service, it was announced that a Scholarship Fund in Scott's name had been established at the Dalton School for deserving and needy youngsters. 

We received numerous condolence notes.  As would be expected, many were short and obviously sent with the awkward caution of people writing to parents who just lost their only child.  What does one communicate in such an uncomfortable set of circumstances?  On the other hand, some were quite well thought out and comforting and deserve to be partially quoted in this writing.  

State Supreme Court Justice Burton Roberts, my former colleague in the NY County DA's Office wrote:  

"..One doesn't measure the importance of a person's life by determining how long he or she lived.  The worth of a person's life is determined by the impact his life had on others and on the love that was bestowed on him.  If there be any truth to that statement, then the memories created by Scott's actions, words, deeds and courage, will be forever green..."  

Scott's 15-year old classmate Jesse Furman:

"I cannot begin to express in words the deep sorrow I felt upon hearing of Scott's death.  It is hard to believe that a life so full of love and kindness could be so short in years.  In Scotty's case one need not exaggerate about anything; his immense courage, kindness and love speak for themselves.  I just hope that I was able to repay him for all of the kindness and inspiration he gave to me...  

                                                                                                                                Scotty's devoted friend forever,

                                                                                                                                                  Jesse Furman"    

Dinny (Dethas) Joffe, Scott's Dalton School helper in kindergarten:             "...My strongest memories of Scott were as a kindergarten student.  He was so spunky.  I loved his sense of humor, so clever and quirky.  I remember him in his little white sailor hat so determined to be a "regular" five year old. Now of course he could never have been "regular" because he was too intelligent and special but he did manage to re-enter school with aplomb..."  

Scott's classmate Jenny Danoff: 

"...Scott did not deserve to die.  I do not understand why death has to hit someone as special as Scott.  He always was ready with a kind word and a joke.  His smiling face and friendship meant a lot to me.  If he considered me a friend in the smallest way, I would feel completely honored..."   

A friend from London, England, Brigetta Davidson:  

"...Scotti was so brave.  I don't know any one who could have borne so much with such bravery and I am sure that the "front" he put up was mainly that you should not suffer for him...I got the impression that his main concern was that he didn't add more than that which was beyond his control, to your burden..." 

Pat Grant, an adversary in a litigated matrimonial case:  

"...Your love for him and devastation at his illness were so apparent during our few conversations.  Life is sometimes so unfair..."  

Lillian Gould, a neighbor:  

"...I knew Scott very briefly as a sweet, gentle boy who loved his little dog..."  

Dr. Rich Trifiletti, who was with Scott at the end in the Babies Hospital PICU:

         "...I know he is finding peace in Heaven.

He was an inspiration to all of us on Earth..."Jennifer Schaen, a classmate:

 

"...I feel so sorry that Scott has left us.  When Scott was in school he never seemed to be upset or unhappy, but always in high spirits.  I really admired Scott for his handling of the situation, I don't think that anyone else could have coped with it as well as he did.  All the students only had nice things to say about Scott because he always seemed to be around when ever you needed him.  He was great on giving advice, especially in Hebrew School when things weren't going so well between me and either my friends or teachers.  He always had a habit of cracking a joke in any situation.  I guess when he thought of one he would just share it with everyone to make them smile.  I thought that his funeral was beautiful, everyone who attended was really touched, by what beautiful things the speakers said about Scott.  I recall some of the things that I shared with him, like at my 13th birthday party when he seemed to be having the time of his life.  I will sure miss him..." 

Our cousins Ferne, Burt and Andrea Goldstein:  

"...We will always remember Scotty - He was the bravest person we ever knew..."

 Scott's classmate Stephanie Snyder:

"...I will miss his great sense of humor and his sweetness.  He always knew how to cheer me up.  I will remember him always..."  

 

Kay LeRoy, the mother of one of Scott's classmates and a friend:     "...All of us privileged to know Scott saw the human spirit at its bravest and noblest..."    

Miriam Berk, a cousin from Florida, sent along some favorite condolence messages of her late husband Herman Berk, quoted from Ben Franklin and Abe Lincoln:

"A man is not completely born until he is dead.  Why then should we grieve, that a new child is born among the immortals, a new member added to their happy society.  We are spirits.  That bodies should be lent us, while they can afford us pleasure, assist us in acquiring knowledge, or in doing good to our fellow creatures, is a kind and benevolent act of God.  When they become unfit for these purposes, and afford us pain instead of pleasure, instead of an aid become an encumbrance, and answer none of the intentions for which they were given, it is equally kind and benevolent that a way is provided by which we may get rid of them. Death is that way...he, who quits the whole body, parts at once with all pain and possibilities of pains and diseases which it was liable to, or capable of making him suffer."⁵⁷

                                              Benjamin Franklin                                                                                                                                             

"In this sad world of ours, sorrow comes to us all, and it often comes with bitter agony.  Perfect relief is not possible, except with time.  You cannot now believe that you will ever feel better.  But this is not true.  You are sure to be happy again.  Knowing this, truly believing it, will make you less miserable now.  I have enough experience to make this statement."

     Abraham Lincoln

  Finally, Dr. Laval, Scott's eye doctor, wrote:

       "I'm proud of your family!

       You never gave up.  God bless you..."

 

CONCLUSION 

Scott is no longer here in mind and body.  But his spirit lives on, and to those of us who knew him, he still lives with the same courage, love, caring, humor and wisdom we experienced during this lifetime.  It is senseless to spend a great deal of time questioning why he was taken from us so early in life before he had a real chance to put those wonderful qualities into productive use.  What we do know however is that but for Scott's impenetrable spirit, he would have been taken even earlier.  He gallantly fought such insufferable deterrents against life, not only with dignity, but never without sincere and deep concern for fellow sufferers and those who were caring for them.  They haven't come up yet with a cure for malignant central nervous system disease, but Scott taught a number of doctors and nurses that its not wrong or silly to keep fighting and to have hope, even when faced with overwhelmingly negative statistics.  He never graduated from high school, but he taught his classmates lessons in courage and meeting and facing adversity that they will never forget.  He never graduated from, no less went to college or medical school, but he permanently left his mark on some of the world's most renowned physicians, providing for them, living proof, for an extended period of time, that the will to live, must never be under-estimated, in the diagnosis and prognosis of serious and even terminal illness.  He never experienced the role of husband or father, but he gave such love to Rena and to me that I know he would have been a great one.  His many friends can attest to the fact that even in his tender years, he had learned that giving rather than taking, is the main ingredient of true friendship.  

When I decided to write "Scott's Memoir," I thought that it might be helpful to others who find themselves in the unfortunate predicament of facing serious illness of their child, to memorialize in a narrative about our very courageous Scott's long eleven year battle with malignancy.  I wanted to tell them about many happy moments over eleven years despite a terrible initial diagnosis in 1977 of incurable disease when Scott was only four+ years of age, and a prognosis then that he had only six months to live.  By perpetuating our story in an extended sketch of what happened to Scott and us during this lengthy battle between life and death of our only child, perhaps children and their families may gain some strength and sustenance from the courage, humor and caring for others, Scott displayed during his lengthy affliction. 

Equally important, perhaps some in the medical profession, who might otherwise be quick to give up on life, and callously, and sometimes prematurely, recommend "pulling the plug," might learn from our experience with Scott, that the sustaining of life and "quality of life" is a very subjective and personal subject, perhaps better addressed by the patient and his or her family, in conjunction with their doctors and nurses who know them, than by those strangers in the medical profession, who would coldly confront them, during times of crisis, with all of their vast medical knowledge and experience, untempered in the crucible of having worked together for many years to prolong the very life in question.  

Scott's relatively short but rich life and our experience in watching it sustained long beyond the expectations of his doctors provides sufficient testimony, without more, to justify never abandoning the hope for life and life itself until God's will makes it inevitable that the reward of death [i.e., the end of pain and suffering] outweighs the beauty and joy of life.  

Scott's rare spirit, his vigor and zest for life and his ability to pry some cheer and bliss out of almost every inestimable day of his life, kindled our faith and helped us to live and enjoy many moments of his remaining years instead of waiting with sorrow and resignation for his demise.  This is the dominant theme and essence of what I've tried to convey in this last tribute to our only child Scott.  And so Scott, one "coke classic with ice and a straw" coming up for you and Snoopy.

 

THE END

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