MARCH, 1987

SCOTT'S FOURTH SPINAL SURGERY

[HIS SIXTH HOSPITALIZATION]

By March 17, 1987, Scott's ability to walk had worsened and he was readmitted to the Babies Hospital for reevaluation.  After x-ray angiography and a myelogram that day, it was determined that there was a complete block once again at the T11 surgical sites of the November, 1986 and February, 1987 spinal surgeries.  Drs. Carmel and Gold were really worried.  Dr. Carmel called me to his office at the Neurological Institute.  He told his secretary to hold all calls, closed the blinds, shut the lights and proceeded to begin a slide show consisting of color slides taken by himself* during the prior two spinal surgeries.  I saw with my own eyes the mass of tumor tissue excised during the first surgery and the blood clot seen and removed during the next spinal surgery.  Dr. Carmel explained to me, assisted by the demonstrative evidence provided by the slides, that the complete block now, was in all probability, caused by one of two possible conditions - either intra dural tumor tissue had rapidly and aggressively grown back since the last surgery performed less than a month before or somehow, fluid had gathered in the spinal cord, either of which was observed during the tests as a bulging spinal cord.  Dr. Carmel went on to say that if it was rapidly growing tumor tissue causing the block, the situation was hopeless and he would not recommend further surgery but rather to simply take Scott home and enjoy him for the rest of his short life.  On the other hand, if it was fluid causing the block, which could only be determined during surgery, then surgery was worthwhile because the fluid could be shunted away.  I quickly consented to the surgery, signed the "informed consent" form and once again Rena and I waited for the surgery to be over.  This time however, as the time passed when we had been told that the surgery would be over and it wasn't, I began to think in terms of this being a hopeful sign.  After all, if Dr. Carmel had started the operation and observed rapidly regrowth of tumor tissue, wouldn't he simply close Scott up and finish.  When Dr. Carmel came down to talk to us after the surgery, he said that as soon as he opened the spinal cord, old yellow spinal fluid spurted out, immediately reducing the bulge.  Apparently, this phenomenon explained the pain Scott felt previously after laughing, coughing or sneezing.  Somehow because of a damaged spine, perhaps caused by radiotherapy many years before, fluid would go into Scott's spinal cord by force [as during laughing, coughing or sneezing] but could not escape.**  What Dr. Carmel did to meet this issue was to insert a spinal shunt [i.e., a small catheter in his spinal cord] which shunted or permitted excess fluid to escape from his spinal cord into the spinal canal.

After the surgery, Scott recuperated in his room at Babies Hospital.  Once again, he enjoyed hamburgers from nearby Wendy's Restaurant or ravioli from a can sold in the vending machine downstairs.  Of course, there was a never ending supply of coca cola and hawaiian punch to satisfy his thirst.  As was our custom, Rena and I took turns staying at the hospital with Scott.  Usually, she stayed during the week and I stayed on weekends.  After work, when I didn't sleep over, I would come up to see Scott in the evenings.  During this hospital admission, Scott's condition was complicated by the fact that he picked up a stomach virus while in the hospital.  Of course, until it was diagnosed as a stomach virus, much attention was placed on the possibility that the brain shunt had become infected since the symptoms of virus were similar.  Poor Scott.  On the day [March 25, 1987] that he had invited Drs. Gold and Bello to a lunch for patients and doctors in the hospital's playroom, he was ill with the virus and couldn't enjoy the food at all. 

A PIZZA PARTY FOR THE CHILDREN IN THE HOSPITAL

We did have some time for fun in the hospital even during these dark days with Scott having all the surgery and the reoccurrence of tumor after many years without symptoms.  On March 26, 1987, Scott and I had a pizza party for the children on Babies 11 South.  We invited Agnes, the feared technician who drew blood from the kids.  She really was a very nice lady and she turned out to be a very good sport.  I arranged with her before the party to come to Scott's room with her kit, containing all of her equipment, except needles.  I told her that the children would be hiding in the room and would make believe that she was the patient.  She readily went along with the ruse.  When she arrived, she went to Scott's bedside, making believe that she didn't see the children, who were garbed in sterile masks and gowns.  When she approached Scott's bed, I told her that she didn't look well and would she mind lying down on a stretcher which had been conveniently rolled up outside the room.  When she got on to the stretcher, she permitted the children [giggling uncontrollably] to tie her down with body restraints.  They then proceeded to wrap her up with bandages, containing ketchup, to simulate blood.  We hung an IV pole with three IV bags and lines hanging from it and attached them to Agnes with tape.  The bags contained red, white and green fluids [water soluble paints, obtained from the hospital's playroom], symbolizing the colors of the Italian flag, in honor of the pizza party.  One of the kids told Agnes that she was going to give her a neurological test and proceeded to take off her shoes and tickle her feet.  When Agnes, who was quite ticklish, would break out into laughter, the kids would squirt her with ice water from a larsyringe; and she could not escape the fun and frolic because she had volunteered to lie down on the stretcher and be restrained.  Then the kids and I rolled Agnes on the stretcher, swathed in ketchup bandages, with the red, white and green IV bags swinging from a pole, through the hospital corridors and on to the elevator to another floor where we rolled her up to a nursing station, loudly saying to the puzzled nurses gathered at the desk, "Stat*** admission."  Everyone had a good time; Agnes was rolled back to Babies 11 South where she was released from the stretcher; she washed up; hugged all of the children and joined them for pizza and cokes.  Agnes told me later that this incident made her job easier. No longer were the children afraid of her.  She had established a reputation for being a good sport and taking blood from the kids was never the same thereafter.

SCOTT'S SIGHT IS AFFECTED