Columnist Sandy Thompson: Couple battled odds for grandson’s life

Sandy Thompson

Saturday, Jan. 20, 2001 | 10:21 a.m.

Sandy Thompson is vice president/associate editor of the Las Vegas Sun. She can be reached at 259-4025 or e-mail at thompson@lasvegassun.com

SCOTT RUSSO, 19, was not expected to survive the latest in a long series of operations to repair damage caused by a rare neurological disorder.

An inoperable cyst on his brain was causing fluid to improperly drain into his spinal cord, damaging it. He began experiencing short-term memory loss and had difficulty walking.

His 10th surgery in seven years left him unable to speak or walk at all. Doctors advised Scott's doting grandparents, Bernie and Phyllis Siegel, to take him off the ventilator and let nature take its course.

The Siegels were torn about what to do. They knew that the boy they had raised since he was a year old was a fighter. He would fight this latest battle -- and maybe win -- wouldn't he?

One day in the hospital, Phyllis turned to Scott and asked him if he wanted the doctors to pull the plug. Scott mouthed his response: No, I want a long extension cord.

That was seven years ago.

Instead of placing Scott in a nursing home as recommended by doctors, the Siegels took their beloved grandson home, turning their living room into a mini-hospital intensive care unit. It would not be easy. Scott could not talk or walk. He had difficulty breathing and over the years faced more surgeries and treatments.

The Siegels were encouraged by the tiniest of signs that their grandson would someday speak. Then he went in and out of comas. Hope was replaced by fear and frustration, but never despair.

The Siegels remembered how Scott fought for the right to a quality education in high school when his condition began deteriorating. He sued the school district over special education issues and won. He graduated with his class. He loved school, the Siegels said, and he dreamed of going to college and becoming a lawyer.

Then his "neurological time bomb" exploded, and those dreams would never be realized.

The Siegels carried on Scott's fight when he was bed-ridden, often battling an insensitive medical bureaucracy for equipment, treatment and benefits for Scott. Many considered Scott a lost cause and -- directly or indirectly -- encouraged the Siegels to give up on him.

They wouldn't.

A few nurses remained loyal and continued caring for Scott in the Siegels' home. The Knights of Columbus from St. Elizabeth Ann Seton Church helped out. They volunteered to build a room onto the Siegels' home, through Christmas in April's home rehabilitation program, so Scott would have space for his special medical bed. The bed and other medical equipment had been crowded into the living room.

For seven years the Siegels watched over Scott, attending to his every need, day and night. They even had a television by the kitchen table that was hooked up to a monitor in Scott's bed so they could see him as they ate lunch or sipped coffee in the morning. They kept detailed notebooks filled with daily logs of Scott's days, his reactions or lack of, his medications, etc.

At that time, Bernie recalled how Scott was before he became ill -- a "beautiful boy" with an inquisitive mind and acute sense of humor. He was Bernie's best friend as the two traveled across the country to every amusement park on both coasts.

The Siegels did whatever it took to care for that boy in hopes he would improve. Scott's own wish was to one day walk into his doctor's office to prove the prognosis wrong.

But that was not to be.

Last Tuesday, at the age of 26, Scott Russo lost his fight for life.

He had undergone hip surgery and had a stroke. He couldn't breathe on his own.

"It was just a matter of time," Phyllis said.

Throughout his ordeal, Scott had touched so many people. Someone was always visiting the Siegels to see him. Noting that Las Vegas "has a big heart," Phyllis is grateful to everyone who helped Scott. He never got to sit in either of the two wheelchairs the Siegels received. In Scott's memory, Phyllis wants to donate them to people who need them.

As Phyllis talked of the offer, her words were choked by tears.

"He had been through so much," she said of Scott. "He's not suffering any more. I know he's at peace."

No doubt, Scott Russo now will become the caretaker, watching over his grandparents who had dedicated their lives to him and his dreams.

As Phyllis said, "He's free now."