Scott Goldstein's Memoir by David A. Goldstein

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SCOTT GOES TO COLUMBIA [HIS FIRST HOSPITAL ADMISSION]

Finally, Bill told me that one of the best pediatric neurology departments in the NYC area was at Columbia Presbyterian Hospital and its Neurological Institute and Babies Hospital.  He gave me the names of three highly reputed pediatric neurologists at Presbyterian including Dr. Arnold P. Gold, who he described, by reputation, as being known to be especially compassionate.  Since I knew that we were going to need all the compassion and understanding we could get, I immediately telephoned Dr. Gold's office and was lucky under the circumstances to get an appointment on April 20, 1977.  We sure did a lot of worrying between April 15 and April 20 when we went to see Dr. Gold. 

I can honestly say today, almost twelve years after Scott's horrible illness first became known to us, both Rena and I owe a special debt of gratitude to him for the compassionate skill and dedication with which he guided us during the entire period.  He was simply always there to listen and comfort without ever abandoning his philosophy of delicately mixing candor and compassion.

At Dr. Gold's office on the second floor of the Neurological Institute at 168th Street and Fort Washington Avenue, we met Dr. Gold for the first time.  He was white haired in 1977 and immediately gained Scott's confidence [and ours] with his warm and friendly manner and especially his Sesame Street finger puppets.  Besides Scott enjoyed writing numbers and drawing for Dr. Gold which Scott surely didn't realize was part and parcel of the overall neurological testing.  In those early days, Rena and I were present during the entire office visit.  Later as Scott got older, the office visits were private between Dr. Gold and Scott and we would be called in only for the consultation afterwards.

As part of this initial office visit and every other one through the years, Dr. Gold examined Scott's eyes with an ophthalmoscope.  He told us later that day that he observed an abnormal condition he described as "papilledema" which indicated increased intercranial pressure.  He explained that since the brain was completely encased within the skull, if brain fluid, which was constantly being manufactured by the choroid plexus tissue in the ventricles, was obstructed from getting out of the brain and into the spinal canal it would cause increased intercranial pressure, observable by fuzzy disks in the back of the eyes.  This visual observation together with the symptoms of headaches and projectile vomiting together with the CAT scans showing abnormally enlarged ventricles indicated an acute life threatening medical emergency requiring immediate emergency hospitalization and surgical intervention to relieve the pressure which if untreated could lead to blindness and death.  There was no time for reflection or even a second opinion.  Scott would be admitted immediately as an emergency patient to Babies 11 North* in the Babies Hospital at the Columbian Presbyterian Medical Center Hospital for a workup and probably brain shunt surgery to relieve the pressure.  Scott was a sick pup and Rena and I decided, without much time for thought, that we would stay with him since hospitalization for a four year old child was a frightening experience for all of us to say the least.  Little did we then realize that we all were to remain there at the hospital, 24 hours a day, for five weeks, for enumerable tests [blood tests, spinal taps, myelograms, Cat scans, ultrasound scans, x-rays, etc.] and ultimately a diagnostic spinal laminectomy [at the L-4 level].  Our togetherness during this April, 1977 hospital admission inspired Scott to scribble a note to us which read:

"Mom and Dad and Scotty -
that makes three of us."  

I cherish that note, in Scott's early handwriting, to this day, not only because it is one of the few mementos we possess, in Scott's own handwriting, at an early age, but because it symbolizes that in dealing with Scott's illness for eleven years, our family remained intact and stronger as a unit than any of its parts.  Our relationship of trust and love and unwavering hope was fed and stroked by each other and when one weakened, as we all did from time to time, the others were always there to provide strength and support.  This permitted Scott to thrive during much of this time which included many happy and productive years.

Something interesting and hopeful happened the very first day at the Babies Hospital and it had a profound effect upon our thinking throughout Scott's illness.  Simply stated, we became conditioned early on during Scott's illness, in fact at the very outset of his medical treatment, to always hold on to a ray of hope no matter how slim [i.e., to a possible upturn, to the possibility of the least of the ominous differential diagnosis presented to us at the moment, to the possibility of a mistaken diagnosis or prognosis] and no matter how devastating the news of the day was.  We had been forewarned, as early as April, 1977, first by my brother Bill and then by Dr. Gold during his initial examination that Scott was likely to undergo a brain shunt operation to relieve his life threatening abnormally high intercranial pressure.  I remember hearing the admitting doctor tell the nurses that Scott was "NPO,"** meaning that he was to receive no food or drink by mouth.  We were soon to learn and Scott quickly picked up that "NPO" meant that surgery or invasive testing was probable.  In fact, the consensus of medical opinion, we were later to learn, was that Scott's first admission to Babies Hospital in April, 1877 was primarily for immediate brain shunt surgery to relieve the abnormally high intercranial pressure and then after stabilizing his neurological condition for further neurological evaluation to determine, if possible, the specific etiology and cause for the increased intercranial pressure [i.e., self limiting brain inflammation or tumor disease].  We didn't know at that time that Dr. Peter W. Carmel, the Chairman of the Department of Pediatric Neurosurgery at the Neurological Institute and a world renowned and highly reputed pediatric neurosurgeon had already been consulted by Dr. Gold and was standing by with his team of well trained neurosurgery residents, ready to perform immediate emergency brain shunt surgery on Scott.  

During Scott's initial admission and while he was being worked up by a young pediatric neurology resident, it was decided to immediately give him an anti-inflammatory drug, called Decadron.  Within a half hour after taking the pill, Scott seemed to pick up in spirit and attitude.  He said that his headache was gone.  He didn't feel nauseous.  He was much more chipper and happy and he was no longer sullen and quiet.  Even his color seemed to change from sickly gray to pinkish.  What had started as a very frightening day for Scott and all of us had turned into a routine hospital admission the newness of which peaked Scott's insatiable intellectual curiosity.  Soon he was barraging the doctors and nurses with a variety of questions, mostly geared towards making him feel secure in space and in time?  Why was he there?  How long would he stay?  Could his parents remain with him?  Would that nice Dr. Gold come by with his Sesame Street puppets?  There would be no shots, would there?  When could he eat and drink?  Do they have ice cream in the hospital?  Could he watch his favorite TV programs?  When it was announced that Scott could have supper and his favorite drink [Coca Cola or Hawaiian Punch] we knew that there would be no brain shunt surgery,*** at least for the time being.  We learned later from Dr. Gold that the then planned brain shunt surgery was called off when the Decadron immediately relieved Scott's symptoms of high intercranial pressure.  Dr. Gold, who was quarterbacking the medical team, initially concluded, against a ground swell of contrary medical opinion from the neurosurgical team, that the surprisingly quick effect of the Decadron bought the medical staff some time in order to attempt to determine through medical testing, the specific etiology which caused Scott's high intercranial pressure.  Dr. Gold felt, as he later was to tell us, that the anti-inflammatory effect of the Decadron drug, removed Scott's condition from an acute life threatening medical emergency to a more stable neurological condition, of unknown origin, which could be studied more leisurely without the immediate irreversible invasive surgical procedure of brain shunt surgery, performed virtually in the blind.  As he later explained, what worried him then was the possibility that the ventricular obstruction in Scott's brain was caused by active tumor disease and that inserting a brain shunt leading from his brain to his intestine or plural cavity or heart [the three places where the brain shunt is placed to divert otherwise obstructed brain fluid], might cause the immediate hosing off of numerous tumor cells to another part of Scott's body, thereby quickening the spread of tumor disease.  In short, Scott was saved from brain shunt surgery in April, 1977, by the insightful and intuitive thinking of Dr. Gold, for which we are grateful to this day.  Not only did his decision to postpone brain shunt surgery in April, 1977 avoid the trauma and expense of surgery then, it avoided the inevitable numerous surgical maintenance procedures for almost nine more years since we were later to learn and experience [after Scott's brain shunt operation in January, 1986] that children either outgrow brain shunts or they may have to be frequently replaced because of infection, obstruction or malfunction.  Perhaps more important however, the unexpected but nevertheless welcome change from planned invasive brain shunt surgery in April, 1977 to more conservative Decadron anti-inflammatory drug therapy, conditioned us early on and throughout Scott's long illness to always maintain a modicum of residual hope that the discouraging message of today, the ominous recurring symptoms, the unfavorable differential diagnosis, the recommended invasive treatment or whatever dismal event had occurred, would change for the better, either because of mistake, God's will and even sometimes without any logical medical explanation.  After all, we told ourselves, time is on our side.  Live each day for itself.  Be thankful that Scott could experience some joy or happiness that day.  Take nothing for granted and perhaps over the passage of time, a cure would be found for the insidious affliction of childhood tumor disease.  

Well we had survived the first day at Babies Hospital with no surgery and thanks to the Decadron, Scott was feeling a lot better.  Not a bad first day - not a bad beginning we thought to ourselves.  Sure we were still worried since we realized that fear of the unknown is sometimes worse than the unknown itself.  Life had taken on new meaning and the Goldstein family would never be the same again.

While we were in the hospital in April-May, 1977, we met other children and their parents who were experiencing the uncertainties of testing for the cause of neurological symptoms, similar to us.  One Friday night, the parents of a young patient down the hall invited us to join them in their room for a short religious service involving some prayers, the symbolic lighting of a candle and the sipping of wine.  Scott was not too enthusiastic about the event but reluctantly came with us, complaining all the way.  During the service, which only lasted fifteen or twenty minutes, Scott tugged at my pants and seemed very unhappy.  Later, after we left and were back in our own room, Scott stated "Please don't take me to any more pray parties."  He was never at a loss of words.  

Shortly, our worst fears were met with news that a few suspected tumor cells were found during a spinal tap.  We were reminded however that often inflammatory tissue mimics tumor tissue and that more tests were necessary.  What was of great concern was the possibility that if tumor cells had spread from Scott's brain to his spinal cord, this was an indication of a rapidly spreading central nervous system tumor disease, a most unfavorable medical condition.  The possibility of spinal tumor involvement was further indicated by a laboratory report of a high protein count in the spinal fluid.  The doctors were somewhat puzzled however because the CAT scans of Scott's brain did not show a tumor mass at that time and they indicated that it was extremely rare**** to have high intercranial pressure simply from spinal tumor involvement.  Thus, as early as 1977, there was constant discussion concerning whether or not there was tumor tissue in Scott's central nervous system at all; or was it self-limiting inflammatory tissue; if it was tumor tissue, was it in his brain; was it in his spine; had it migrated south from brain to spine; had it migrated north from spine to brain; was it anywhere else; was it benign or malignant?  All these nasty questions had to be answered and resolved before determining whether Scott's neurological problem was curable or treatable, whether by radiotherapy, surgery, or chemotherapy, or a combination thereof.  

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