Paul S.

Paul S., 30 August 22, '75 - December 18, '95 cancer

"Family, friends cope with tragedy - Clinton Township's (Family) victims of rare gene disorder" article by Bruce MacLeod, appeared in The Macomb Daily, June 1996.

Two young men sat in the middle of Lakeside Mall's center court, sipping coffee, passing time as young men do. Both being students, the pair talked about college classes and upcoming tests. Having met first in youth soccer and then becoming close friends as high school cross country teammates, they spoke of sports. But being men just barely into their 20's, they spent the majority of their time together noticing the girls who walked past them through the mall. Watching, whispering, wondering. The subject about which these two friends did not speak was terminal cancer. Not on a day such as this when everything was so good. 'I made a pact with myself,' said Chris. 'No matter how Paul felt, I was going to talk with him and treat him like nothing was wrong. If we had a limited amount of time together, I wanted to make it the best quality for both of us. I think he wanted it that way.'

In March 1994, Paul pulled up from running during a track practice with his Chippewa Valley team. Then a senior, Paul felt sharp pains in his right leg – an injury that was initially diagnosed as a stress fracture. Later tests revealed, however, that a cancerous tumor in the calf area had caused Paul's leg to break. Seven months later, Paul and Chris were sitting in the middle of Lakeside Mall, allowing themselves to be young men. Chris was home for the weekend from Western Michigan University. Paul, now bald from chemotherapy and using a prosthesis after having his right leg amputated, was a student at Macomb Community College. His illness was part of a series of tragedies that has stricken the S. family of Clinton Township. In the past 21 months, three of William and Mary's five children have died – two of cancer and one in an automobile accident. Another has been diagnosed with cancer. William has lived with non-Hodgkin's lymphoma. The S. family carried a rare gene disorder that creates a high risk for cancer. The condition is labeled Li-Fraumeni syndrome.

Carolyn, William and Mary's eldest, was just 21 when she was diagnosed with cancer. The woman who had been a success before becoming ill, however, remained so afterwards. As a student at Chippewa Valley, Carolyn was a member of the National Honor Society and earned a National Merit scholarship to Wayne State University. There, she became a Phi Beta Kappa, earning her degree. Carolyn became a student teacher and substitute teacher at Chippewa Valley. She taught Spanish in the classroom. She taught people everywhere how to live with honor and dignity. The liposarcoma that grew in her neck eventually moved up into her brain. Carolyn, however, did not allow that cancer to take her life away from her while she was still alive. She remained as a teacher. She traveled to Spain, having earned a graduate fellowship from Bowling Green State University to study in Madrid. And in April 1994 – five months before she died – Carolyn and David B. were married at St. Michael Catholic Church in Sterling Heights. Carolyn and David, a fellow teacher at Chippewa Valley, had fallen in love. Cancer couldn't keep them apart. 'Carolyn was just like Paul in a lot of ways,' said Chris C. 'She was going to live her life how she wanted.' Carolyn's and Paul's diseases overlapped.

When Paul attended his sister's April wedding, he did not know the extent of his illness. Three months later, he had been diagnosed with cancer. Two months after that, Carolyn passed away in the S's home. 'He was watching her die before his eyes,' said their mother, Mary. 'He would keep a strong front. He was a very upbeat kind of person. 'Paul said once through, 'This isn't going to happen to me like it did to Carolyn.'' Both Paul and Carolyn, the youngest and eldest of the S's siblings, were in and out of the hospital that summer. In late August, just after turning 19, Paul went back into the hospital. On the Friday before Labor Day, he had his right leg amputated. Carolyn visited her baby brother. By this point, the cancer had left her blind. Carolyn had to be guided over to Paul's bed. 'They were more concerned with each other than themselves,' Audrey once said, the second eldest of the children. 'It was really a touching moment. They each wanted to make the other feel better.' Later in September, Carolyn attended a cancer support group despite having to be carried into the meeting by her husband. She did so because she had promised another patient that she would be there. Two weeks later, Carolyn died at the age of 27.

Paul's older brothers, Brian and Patrick, were high school runners. Paul tagged along, coming out to practice as an eighth-grader. By the time he was a junior, Paul had competed in biathlons, triathlons and qualified for the state championships in cross country. Paul had talent. He was in the school choir and performed musical numbers at Chippewa Valley talent shows. He was athletic and handsome. Most of all, he was a good soul. 'Paul was popular and very well liked,' said his cross country coach, Doug. 'But he didn't need everyone's attention. He was mature, a secure-type kid. If he walked into a room, everyone wouldn't turn and look at him. But the people he came in contact with would think the world of him.' A videotape shows Paul as a junior at cross country camp in Tennessee. With a friend manning the video camera, Paul walks around the Chippewa Valley camp site, ad-libbing humor along the way. Between the sleeping bags and hiking paths lay the only fascinating thing on the tape – Paul's charisma. It wasn't just Paul's future that was bright. So was his present. At the time, it seemed everlasting.

Near the end of his senior year, however, symptoms of Paul's cancer surfaced. 'Being young and dumb, we didn't equate Paul and death,' said Chris C. 'I had never known anyone with cancer. When I first heard, I couldn't understand how he could have it.' Paul's condition worsened. As his classmates were preparing for their first semester at college, Paul was having his leg amputated. There were tests. There were biopsies. There were trips to Minnesota for laser surgery. All the while, Paul remained active. He went to his friend's homecoming dance. Suit, tie and prosthesis. He started classes at MCC. He biked and he swam. He visited Chris at WMU multiple times, calling his friend weekly. He dropped in on Chippewa Valley cross country meets, acting as a play-by-play broadcaster for those in attendance. 'His courage was the amazing thing to me,' said Chippewa Valley track coach Bob S. 'The way he stayed positive during his ordeal. I thought when I saw him 'If I can take a little bit of Paul S. with me, I'll be so much better off.'' Paul's chemotherapy eventually evolved into the experimental sort. The cancer spread in his body, eventually reaching his brain. Paul didn't talk much about his illness. None of his friends did. 'They didn't say anything about it really,' said Jackie K., whose son Michael was a friend of Paul's. 'When Paul was with the others, he just wanted to be one of the guys.'

In the last couple of months of his life, Paul's health grew poor enough that he stopped attending class and remained at home. The young man who once applied for a job with Detroit Oxygen as a delivery person was now receiving oxygen from that same company. Mary & Bill fixed their basement into Paul's residence. A big Lay-Z-Boy was brought in. Bathroom and bed were close by. When Chris came home during Christmas vacation, he realized how bad his friend was feeling. Paul insisted that his family attend his brother's graduation from Michigan. Chris volunteered to stay with Paul. 'I'm grateful to have had that time with him,' said Chris. 'He told me not to worry about him when I went back to college. But it's tough to look at my best friend fighting like that.' The pair ate dinner together. At one point, Paul had a coughing episode, spitting up blood. 'The only effect this had on Chris and Paul was that it took them out of their normal teen-age life and brought them face-to-face with something that someone my age doesn't like to deal with,' said Doug N. 'Their loyalty throughout it was incredible. To be honest, the concept of getting sick before I die scares me now. I don't know if I could ever live up to the example of what I saw.'

The family put up their Christmas tree in its usual spot early in December 1995 – the basement. It was Paul who pointed out that it was missing one ornament – the one that served in memory of Carolyn. Mary and Bill thought that it might hurt Paul's spirits to have such a reminder near. Paul insisted that it be hung. Just as he asked that his family continued its daily routine and not overcompensate for his illness. On Saturday, Dec. 16, Paul had a change of heart on that matter. He mentioned to his mother that she might want to start staying home from work on occasion. Two days later, with 25 people gathered around him in his room, Paul passed away at the age of 20. Chris remained strong throughout the funeral preparations and services. Upon request, he lined up enough pallbearers that the casket was passed from one set to a second. After it was done, Chris went to his family's hone in Clinton Township and broke down.

Li-Fraumeni syndrome is a genetic disorder. Specifically it is an abnormality to a gene called P53. The gene is inherited and in families that develop Li-Fraumeni syndrome, children have a 50 percent chance in acquiring the gene, according to Dr. David Ginsburg, chief of the Molecular Medicine and Genetics Division of the Department of Medicine at the University of Michigan. Those who inherit the gene have a 90 percent chance of developing a cancer in their lifetime, said Ginsburg. The cancer follows no patterned timetable. It might develop during teen-age years. It might come during one's retirement age. Brain tumors, prostate cancer and lymphoma are common complications. The occurrence of Li-Fraumeni syndrome is extremely rare, according to Ginsburg.

Audrey, the second-eldest of William and Mary's children, worked in the Navy as a mess management specialist. She was a cook, stationed in Florida. When Audrey found out that her brother Paul was very ill, she applied for and received a reassignment to Michigan. Audrey moved back home with her parents and Paul. She was reunited with her dog, Bandit. Audrey set up a schedule of working as a recruiter in Navy offices in Mt. Clemens, Sterling Heights, and Port Huron. She had seen her sister Carolyn eroded by cancer. Now she watched as the same thing happened to her brother – the sibling who was born six years to the day after her. 'Right up to the end, Paul was worried about Mom and Dad than about himself,' Audrey had said. Audrey helped her parents through Paul's death. She was scheduled to be reassigned back to Florida in early March of this year. On January 11, one day before she was scheduled to be tested for Li-Fraumeni syndrome, Audrey awoke late for work. Scheduled to be in the recruiting office in Lapeer first thing that Thursday morning, Audrey raced out of the house. At 10:23 a.m., Audrey's call collided with a semi-tractor trailer truck on Van Dyke, just south of Bordman. 'I think it probably hit a lot of people hard,' said Mom, Mary. 'The news was pretty much met with disbelief. I couldn't believe it. Somehow, it feels like you're living through a nightmare.' Less than one month after Paul's passing, Audrey died in that accident.

Patrick, the fourth of the children, started feeling his symptoms shortly before Paul's death. A pain in his leg. Sometimes his hip ached. At first, Patrick thought that he might be overreacting. With what he had experienced with cancer in the last few years, it would be natural to have one's mind start playing tricks. Patrick did, however, visit a doctor's office. There he found out the latest in the family's series of tragedies – there is a cancerous tumor in his pelvic area. The 23-year-old has undergone four sessions of chemotherapy in 1996. He is scheduled for a surgery on June 24 ('96) that will remove a piece of bone where his leg and trunk connect. That piece will be replaced with either a bone donation or a prosthetic piece. The son, who his mother calls 'my Irishman' because of his name and coloring, has lost his red hair to chemotherapy. Patrick had planned on moving home to Clinton Township to support his parents emotionally. His illness, however, has forced Patrick to remain in Ann Arbor with his older brother, Brian, close to the U-M medical facilities. 'Brian doesn't talk that much about cancer,' said Mary. 'If it was me, I'd be scared to death.'

This fall, the first Paul S. Award will be given at Chippewa Valley High School. The recipient will be a runner, Not necessarily the fastest at the school. Rather one who can compare to the plaque's inscription, 'A young man of caring and courage – an example for us all.' This spring, the first S. Memorial Fund scholarship was awarded at Chippewa. The $500 scholarship will be given each year to a Big Red student who exhibits some of the same qualities as the three children William and Mary now grieve. The S's are back at their jobs. They worry about their two sons, Brian and Patrick. They think about Carolyn, Audrey and Paul. Chris still calls the just to talk. He and so many of Paul's friends still drop by the house. 'We all went out after he died,' said Chris. 'He wouldn't want us all gloomy. When he died, it was very sad. But in a way, you felt grateful. You could tell him, 'I love you' and hold his hand.' Every so often, Chris hears a song on the radio that reminds him of Paul. He sits in his car, engine turned off, listening. Now and then, he gets distracted in class. An old message on his answering machine comes to mind, 'This is Paul … give me a call.' 'Paul made you say, 'Look what you got – a girlfriend, being away at college, all the freedom,'' said Chris. 'You complain about something like a test, then you think about your friend and he should be here. He should be doing this. 'You feel lucky.'