LATE OCTOBER, 1986
RECURRENCE OF SPINAL TUMOR 

One day in late October, 1986, Scott came home and told Rena that he had lost his balance in school and had fallen on a staircase, injuring his rump.  He mentioned that another girl had fallen also.  We naively assumed at first that his fall had been caused by her fall and not the other way around.  We were in touch with Dr. Gold who examined him and found some neurological deficit and we were advised to watch him closely and report any changes in his condition immediately.  Things got worse rapidly and within two weeks Scott could hardly walk. 

EARLY NOVEMBER, 1986
SCOTT, THE POLITICAL BUILDING CAPTAIN

This story about Scott would not be complete without mentioning what happened one night after dinner during this two week period as Scott's ability to walk rapidly deteriorated.  It was just before Election Day, 1986 and Scott had become interested in politics when I ran for the NYC Council in 1981-82.  We even made a "campaign manager" shirt for him which he proudly wore from time to time.  By 1986, he had become a "building captain" for State Senator Roy Goodman, his responsibility being to distribute the Senator's campaign literature to the 126 apartments in our cooperative apartment building.  Scott reminded us that he hadn't yet delivered Senator Goodman's²³ campaign literature which he said he had to do quickly if there was a possibility that he would be going to the hospital.  That night, with our assistance, and with great difficulty, Scott rode on the service elevator between 21 floors [he was embarrassed by his inability to walk without assistance and didn't want to be seen by our neighbors] and personally delivered Senator Goodman's campaign literature to 126 apartments in our building.  Many months later, when Scott was confined to bed, Senator Goodman, apprised of this remarkable display of Scott's courage, responsibility and devotion, visited him at home and the "boss" pinned his own late father's World War II major's insignia on Scott's hospital gown, announcing Scott's "battlefield" promotion from "building captain" to "building major," a well deserved promotion because of his courage under combat.

NOVEMBER, 1986

SCOTT HAS HIS SECOND SPINAL SURGERY

[HIS FOURTH HOSPITAL ADMISSION]

On Friday night, November 14, 1986, I came home from the office, changed into comfortable clothes and got ready for our regular Friday night chinese dinner.  When the food was delivered, I told Scott to come into the dining room to join us for dinner but he said that he wanted to finish watching a program on TV.  He was lying on my bed at the time and the program was almost over so I went inside without him, expecting him to join us momentarily.  When he hadn't come in for dinner and I realized that his program had finished, I angrily went to the bedroom to scold him for not joining us.  There he was, watching TV as if dinner was hours off.  Without actually realizing that Scott was no longer ambulatory, by himself, I said to him "Do you need a special invitation to come to dinner - must I carry you like a baby"?  He just looked at me sadly without speaking and then I knew that he was unable to walk by himself.  With tears in my eyes and a tremendous feeling of guilt, I physically and singlehandedly half carried this husky teenager into our dining room for dinner.  Little was said as we all gulped down our food.  We all knew that we were headed back to the dreaded hospital.

My friend Carl Bogan helped me to carry Scott into his station wagon and we all drove up to Columbia Presbyterian Medical Center, late on Friday night, November 14, 1986.  Once again, Scott was admitted to the Neurological Institute ICU ["NIICU"].  The next day, he had a myelogram in the basement neuroradiology department.

This particular examination can be quite uncomfortable especially without sedation.  It was particularly uncomfortable for Scott because of his lower back pain and the requirement that he lie perfectly still while x-ray pictures were being taken, with his feet strapped into stationary shoes while the x-ray table was tilted up and down in order to view the contrast solution flowing through his spine.  A young doctor [Dr. Jackie Bello] was walking through and heard Scott's agitated, loud and frightened protestations about the procedure.  By this stage of Scott's illness, he was no longer shy and unfamiliar with hospital procedures and personnel and didn't hesitate to ventilate his emotions to all around him.  Dr. Bello, who was to become Scott's very special friend, quickly sized up the situation and walked over to Scott and introduced herself.  She mentioned that she had heard through the grapevine that Scott was related to Neil Sedaka, the singer, who she greatly admired and that she loved to dance to his music but didn't have any of his records.  She asked Scott to hum or sing one of Neil's songs so that she could dance to it.  Scott, who adored Neil, quickly forgot his own troubles and soon the Sedaka melodies were being loudly song by Scott and Dr. Bello, as she got him calmly through the myelogram, and without any sedation whatsoever.  Such kindness was typical of the medical and nursing staff, and in fact, all of the staff,²⁴ at Columbia Presbyterian.

The fun and frolic between Scott and Dr. Bello was short lived.  Although he tolerated the procedure all right, the test results were ominous.  There was a complete block at the T11 level [about shoulder height] indicating the likely presence of tumor tissue in Scott's spine, which would explain his rapid neurological decline in the preceding two weeks.

On November 16, 1986, almost ten years after the original diagnosis of central nervous system tumor disease, Scott underwent spinal surgery, this time for the purpose of surgically excising as much tumor tissue as possible without causing additional neurological deficit.  By now operations and operating rooms had become quite familiar to Scott and although he was no doubt frightened by surgery, he had learned to cope by helping others to cope and by humor.  When I wheeled him into the operating room suite on the tenth floor of the Neurological Institute [by now I was a familiar figure together with Scott and they no longer made me leave him at the door] an anesthesiologist came over and told Scott to say goodby to his father since they had a busy operating schedule and could waste no time lingering.  Scott said that he wanted to speak first to Dr. Carmel and the doctor once again reminded Scott of their hurried schedule.  Scott then exclaimed "Didn't you guys ever hear of the patient's Bill of Rights?"  Soon, Dr. Carmel was at Scott's side and Scott said:

 "Dr. Carmel, my savior - I'm so glad to see you - before I go under your knife again, I wanted to tell you a little ditty I made up about you - Designer scars, he wears them well, by Pierre Carmel - now you can take me away."

It seems that Scott had remembered from his January, 1986 brain shunt operation that Dr. Carmel habitually placed his initials with an indelible pen on the shaved skulls of his patients undergoing brain surgery.  Scott had been amused when the bandages were removed in early 1986 and he was shown Dr. Carmel's initials on his head and had applied this memory to a takeoff on a Pierre Cardin TV commercial.  Needless to say, Dr. Carmel roared with laughter and no doubt the entire operating team was a little more relaxed because Scott the patient was able to inject some humor into an otherwise somber situation.

Rena and I waited once again for Scott to come down from the surgery.  Each minute seemed like an hour.  What we didn't realize was that the real time involved in actual surgery in the operating room was often much less than the portal to portal time between the moment we left Scott in the operating room suite to the time we saw him again as he was wheeled into the recovery room of the ICU.  Sometimes an hour or more would go by before the actual surgery began because of a delay in the operating room schedule.  To us however, waiting with baited breath, the total time that Scott was out of sight imagining unknown horrible things being done to him, was agonizing, to say the least.  The more time that went by, especially if it went past the projected operating time, the more anxiety welled up within us.  We could only think and conjure up all of the terrible things that could have gone wrong.  Rena and I used to wait anxiously for Dr. Carmel to come down after surgery and watch his face and the way he walked even before he spoke [as I do when jurors return with a verdict] in order to attempt to detect whether he had good news or bad.  There came a time later when Rena would be permitted to wait, during surgery  in Scott's hospital room at Babies Hospital, instead of vacating it.  Usually this would happen when a shunt revision was done rather than some major surgery since if there were no complications, after several hours in the recovery room at Neurological Institute, Scott would be taken back to his room at Babies Hospital.  Although this was more convenient for all concerned, it presented a communications problem for us.  If Rena and I were together at NI waiting for the results of surgery, then we would both be apprised simultaneously by Dr. Carmel and see Scott after surgery at the same time.  But if he would be going back to Babies hospital, someone had to stay there to watch our personal belongings and there was no telephone available for patients' families to use [with privacy] in the NI 9th Floor waiting room.  We adapted to the problem by purchasing walkie talkie radio units which provided instant and convenient communications between us no matter where we were in the Columbia Presbyterian Hospital complex.  I can remember Dr. Carmel taking one of the walkie talkie units one day after Scott's surgery and reporting the results to Rena several blocks away in Scott's room in Babies hospital.  Some of the staff no doubt thought it odd for a child's parents to be running around with walkie talkie radios while their child was so seriously ill.  Even Rena was embarrassed to be seen with the radios and would only use it in the privacy of Scott's hospital room.  As far as I was concerned, if it served a purpose, I really didn't care what people thought.

When Dr. Carmel came down after Scott's spinal surgery on November 16, 1986, I recall that as before, my sister-in-law Madeline and my friend Carl Bogan was there with us.  Dr. Carmel reported that he was able to locate, observe and excise a mass of tumor tissue from Scott's spine which had been sent to the pathologists for examination.  This time, unlike May, 1977, there was no issue whether or not the tissue was tumor tissue or inflammatory tissue.  The only issues were whether the tissue was malignant or benign?;  what kind it was?; and whether it would be susceptible to additional radiotherapy treatment or chemotherapy?  Later we were to be told that the tissue was non-malignant ganglioglioma²⁵ tissue which was not susceptible to either radiotherapy or chemotherapy.  We could only hope that there would be no further growth of tumor tissue and that the removal of tumor tissue which had been pressing on Scott's spinal cord would permit him to walk once again.

This was the first time in the 9+ years of Scott's illness that we were confronted with the issue of his inability to walk.  We were of course hopeful that over time he would be able to walk normally again.  While Scott was in the hospital, recuperating from the surgery, he was supplied with a walker and started to gradually walk again, assisted by the walker.  It was a very frustrating experience but he was determined to walk again and he understood that the best exercise for walking was walking.  No one at the hospital volunteered information about the future and we didn't ask questions about it for fear that the answers might be depressing.  One day however a doctor, specializing in rehabilitation medicine came by to evaluate Scott.  He spent a great deal of time with him performing neurological testing.  He would touch various parts of his body and legs with feathers and pins to see if Scott could feel them.  When he had finished the examination which lasted several hours, he took me aside and in the course of our discussion, inquired whether we had stairs at home and how wide was our hallways.  It was then that I knew that my son was paralyzed, perhaps permanently.  I was devastated.  When I discussed it with Rena, she insisted that the condition was only temporary and that it would improve over time.  The best that the doctors would say was that it was still too early to tell.

During this hospitalization, Scott didn't permit his worsened condition to stand in the way of his kindness and concern for others.  The day after he had been transferred back to Babies Hospital after the spinal surgery and his recovery from it in the NIICU, Scott insisted one Saturday morning that he wanted to go back to the neuroradiology department in the basement of the Neurological Institute to visit his friend Dr. Bello and personally deliver a Neil Sedaka tape to her which he had brought from home.  He was still tied to an IV line running antibiotics or some other drugs into him.  We got permission from the nursing staff and because of his impatience, I took him [without the usual required transporter from the hospital staff] by rolling stretcher through the basement tunnel from Babies Hospital to the Neurological Institute where we met Dr. Bello and Scott presented her with the Neil Sedaka tape.  She had tears in her eyes as she accepted it and kissed him gently on the cheek.  By this time he was affectionately calling her his "Dreamboat."

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