Miracle on 34th Street

Scott at work

Perhaps it’s prophetic that the Hospital of the University of Pennsylvania is located on 34th Street, because on September 11, 1996, when our family needed a miracle we received one.¹

Our son Scott walked into that hospital and never left for 53 days. It was his second brain surgery. The first was done on an emergency basis by a local neurosurgeon in 1993 when he was 28. At that time, he was diagnosed with 15 tumors, four of which were removed. Actually, there were 16 because one was hidden behind another. He recovered nicely from that procedure in spite of our fears.

When an MRI indicated a new very large tumor with its own blood supply and one preexisting tumor that had enlarged significantly, in the cerebellum, Scott was sent to a neurosurgeon at the University of Pennsylvania Hospital.

The plan was that an embolization procedure would be done. A team of doctors would pass a tiny tube into the vein in his groin area, pass the tube all the way up to the cerebellum, and inject a kind of glue into the vein feeding the largest tumor, sealing off its blood supply. This would shrink the tumor and reduce the amount of blood in it, making it easier for the surgeon to deal with. Scott would stay overnight in intensive care, and the following morning the neurosurgical team would go in and remove these two tumors that were dangerously close to the brain stem.

Unfortunately, just as the embolization procedure was completed, the tumor ruptured, spilling over 4 pints of blood and crushing Scott’s brain stem before they were able to open his skull. The ensuing surgery was a horror. Late that night, when they had done all they could do, the two tumors were removed, but the doctors were unsure whether Scott would wake up from the surgery, or what damage might have been done.

I sat by his bed and spoke to him. Somehow, I knew my words would get through. I told him he was my stubborn child and that this was no longer a vice but a virtue that he needed now to carry him through this difficult time.

He did awaken, but so much was gone. His marvelous intellect was intact but his body was significantly damaged. He was totally paralyzed on one side and his sight, speech, swallowing, and motor skills were gone. He couldn’t even blink his eyes – BUT thankfully, he was alive.

In the days, weeks and months that followed, he was often on the edge of death. Unable to swallow, he went into aspiration pneumonia and respiratory failure. Several times we thought we would lose him. Still he fought with all of his strength and survived. The doctors said they had never encountered such a will to live. He simply refused to die.

Each of the many doctors who worked with him took me aside and told me that his survival was miraculous. There was no medical or scientific reason that he should have survived. This was indeed a miracle. My response to all was the same, "This hospital is on Thirty-Fourth street, isn’t it?"

Scott came home by ambulance on November 1st. It was now up to his father and me to provide all his nursing care. He was on a feeding tube. He required suction equipment to remove all of the excess secretions that he generated and could not swallow. He needed to be catheterized every four hours.

Therapists came to our home. First he was taught to sit. If you sat him on the bed, he would merely topple over. In time, he learned to crawl on the same living room floor as he had as a baby. He finally stood, and after ten months began to swallow on his own. His eyes quieted down and stopped bouncing all over and the double vision and blurring ceased. He had speech therapy, occupational and physical therapy at home and then later on an outpatient basis.

My husband Charlie turned our den into a gym. He would wheel Scott into the den and then place him on the equipment. He stood him on a stair climber before he could stand on his own and held him until he took one, then two and then ten steps on it. No matter what goal my husband set for him, Scott doubled it. If Charlie said, "Let’s do five," Scott would say, "No, ten." Charlie held Scott on a stationery bike, his feet strapped on the pedals, while Scott pedaled the bike. For one year this went on.

One day, my daughter came to me in tears. She said that Scott was crawling through the house, pushing his laundry basket and she didn’t know what to do. I told her to go ask him if he would like her to carry the basket to the washer for him. He nodded yes and continued to crawl to the washer, pulled himself up to a standing position, and did his laundry.

At night, I would watch my grown son, much as I had watched him as a little boy, trying to write his name on a sheet of paper. At first, because his motor skills were so poor, he couldn’t even fit the letter "S" on the sheet of paper, but he worked and worked and worked. Each and every night, he worked on his speech, his writing, his motor skills.

He finally stood alone and then with assistance took his first step.

There was a song called "Watching Scotty Grow" that came out when Scott was quite young, about the songwriter’s son and his learning to walk and talk. My husband would sing this song to Scott as a little boy. The words to that song ran through my brain as I watched my son, now an adult of 32, learning for the second time how to do all of those things. I never dreamed that I would see him take his "first step" twice in a lifetime.

Scott is no ordinary human being. He claims to be accomplishing all he has out of spite. Whatever the doctors said he wouldn’t or couldn’t do, his goal was to prove that he would and he could.

To train his eyes to focus, he re-read the works of William Shakespeare. Each night when I got home from work I would take him up to the Boardwalk in his wheelchair and stand him at the rail. We would count the number of steps he could take in a row and the next night he would increase that number. The next summer we did it without holding on to the rail.

When he was seen by the doctors at Penn, they would just laugh in delight. He had defied all odds. He shouldn’t be here, yet here he was and doing the impossible. His determination and the family’s teamwork had pulled him through.

It was about this time, that the neurosurgeon told us for the first time that he was sure that Scott had VHL. Charlie and I both come from very large families and no one in either of our families exhibited symptoms of VHL. Nonetheless, the doctor was sure Scott had VHL. He recommended DNA studies, which confirmed the diagnosis. One copy of the VHL gene wasn’t just altered, it simply wasn’t there – it was totally missing! Charlie and I both underwent DNA studies as well. Both of us have completely normal VHL genes. With our permission, University of Penn’s genetics department contacted the U.S. National Institutes of Health, and Scott spent a week there in the VHL research program.

Scott continued to forge ahead with his rehabilitation. He took computer courses to strengthen his motor skills. He started to walk with a walker and subsequently a cane. He started to apply for jobs and met with resistance. He looked great on paper but, believe me, the doors do not open wide to the handicapped. He took a Civil Service test for Probation Officer in the State of New Jersey and came in #60 out of the 2500 who took the test. He was hired by the Superior Court and began work in August of 2000.

Prior to his first surgery, he was pursuing his Master’s Degree at Villanova University. He had been writing his thesis when this calamity struck. I wrote to the University explaining his situation, and he was permitted to continue his studies. He completed his Master’s degree while working a full day. He submitted his thesis on February 2, 2001, only weeks after he learned that he would soon undergo another brain surgery for the removal of four more tumors and a large cyst in the cerebellum, dangerously close to the brain stem. The doctor warned him that this surgery could set him back again. Scott clenched his jaw and set the date for the surgery. This time, he emerged with no further deficits even though he had two major bleeds during the surgery. At his post-op check up, his first question was, "Okay, when can I go back to work?"

On May 20th, as we stood on the field of Villanova University and "Pomp and Circumstance" began to play, I turned around to see my son, pushing his walker, leading the graduating class. It was the most beautiful sight in the world.

He now walks with a cane, his speech is monotone but distinct and through his exercising daily, his motor skills have greatly improved. He eats everything in sight, and looks like a million bucks. His delightful sense of humor puts people at ease and brightens his days. Scott lives, thanks to the skill of his doctors, but also because of his amazing attitude. I learn from him that every day we have the choice to live fully. Attitude, after all, is everything.

Scott says, "I enjoy my job because every case is different. When people come it to be arraigned, I interview them. I ask them a lot of personal questions, like what type of childhood they had."

Five years ago, a friend asked me, "Don’t you ever ask, why me, why my son?" My answer was, no, because that would mean that I would want this to happen to you or to someone else and that would make me less than human. But it’s more than that. I truly believe that this handsome, determined, strong willed human being is here to be an inspiration for all who see him. My purpose is to be a voice, not only for him, but for all of those who have VHL. Scott is my joy, my miracle.

1. The reference is to the motion picture "Miracle on 34th Street," 1947, 1994.

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