Scott's Story | The Scotty Foundation

In October 1998, we got the news that everyone dreads – cancer. Scott had a large grapefruit-sized tumor near his pancreas and his liver was covered like polka dots. The only symptoms Scott was having were minor weight loss and loss of appetite, Scott although he had had some significant shoulder pain about three months prior, and later some abdominal pains that reminded him of those Darryl Strawberry had been describing earlier that month on the heels of his own cancer diagnosis around the time of the World Series (as it turns out, the cancer in Scott’s liver had caused swelling against his diaphragm, which runs along the same nerve as does the right shoulder). It wasn’t until Scott had night sweats two nights in a row that we became really concerned. Scott was a very hard worker. He was following in his father’s footsteps in the flooring industry, but he was making a name for himself at the same time.

Scott was in the prime of his life. He not only was 28 years old, but also had a daughter who had just turned one. When we got the awful news our world went into a tailspin. What made things worse is that we were told that the doctors not only did not know what type of cancer Scott had but they didn’t even know where it had started. The race began. Phone calls, books, internet research. The whole family worked frantically to find someone who might be able to help us. We immediately met with an oncologist in Atlanta who told us we were in for a fight.

We were told that we should go to the Sarah Cannon Cancer Center in Nashville and see a doctor that specialized in “cancer of unknown primary” (meaning they don’t know where the cancer started). Scott immediately started chemo as prescribed by this doctor, but, at the same time, we were all searching for more answers.

A slide of Scott’s liver biopsy was sent to Sloan Kettering in New York City. After numerous phone calls from Scott’s father to Sloan Kettering he stumbled upon the oncologist who had originally named Scott’s type of cancer. He knew exactly what it was and had treated other people for it already. It was Desmoplastic Small Round Cell Tumor (DSRCT).

Meanwhile slides were also sent to M.D. Anderson in Houston. They also told us that they thought they knew how to treat it. Our heads were spinning. We quickly packed our bags and met with doctors in both cities. Scott had already started chemo under the Nashville doctor’s orders, so he was doing all of this traveling while feeling very sick. After hearing what both hospitals had to say we decided to go with Sloan Kettering. They told us that the chemo that Scott was already on was not nearly strong enough. This was crushing news to us. Scott had been very sick already, and to think that it is only going to get worse. By this time about a month had passed. We needed to act fast. Scott immediately started receiving chemo prescribed by the Sloan Kettering doctor.

Scott and the family

Scott was very sick all winter. We went back to New York City in March for major abdominal surgery. The surgeon opened up Scott from his pubic bone to his chest. They removed the grapefruit-sized tumor as well as other cancer in the lower abdomen. We spent about five weeks in New York while Scott was recovering in the hospital. Finally, it was April and we came back to Atlanta to start the process of a stem cell transplant. That process took us into July, in and out of the hospital with fevers and severe vomiting. In August we were in New York City for a PET scan and to check in with our doctor. While we were in the waiting room Scott started shivering. Within minutes he was shaking uncontrollably. His fever was dangerously high and his blood pressure was extremely low. Scott had gone into septic shock. The port in Scott’s chest had become infected with e coli, and the bacteria had traveled into his blood stream. The surgeon was paged and arrived in minutes. Emergency surgery was performed to remove the port in a small procedure room just steps from the waiting room. Scott was told that he would not have made it if he had been anywhere else.

Scott spent several days in intensive care. Once he was in a regular hospital room he somehow talked the doctor into letting him go home and administer IV’s there himself. Scott missed his daughter and did not want to miss a scheduled family vacation. Scott spent the fall and winter trying to build his immune system back up with blood and platelet transfusions. He counted 108 straight days of doctor visits. After all of these treatments we were all praying for the remaining spots on his liver to have disappeared. Scott had PET and CAT scans that showed little improvement. We were crushed.

We were now told to try radiation. Luckily, we were able to receive the treatments in Atlanta. By this time Scott was feeling better from his stem cell transplant. He used his extra energy to keep researching for the next option. After the radiation was complete we did see some improvement on his scans. We decided to go to a hospital in Staten Island, New York, for a targeted radiation that was every day for about a month. Scott spent his last the Fourth of July in Manhattan in front of the United Nations building.

Next, it was off to Boston to try to get into a clinical trial. The crushing news came again when we found out that Scott’s platelet count was too low to be accepted. We were devastated. Scott and

We came back to Atlanta and had decisions to make that most 30-year-olds should never have to contemplate. The last resort had come. Scott decided to go to Tijuana, Mexico, for experimental treatments that were not approved in the United States. Scott spent six weeks there with family and friends rotating in and out for support. Scott came home just in time for his daughter’s third birthday. He also played golf in a tournament some of his friends had started a few years earlier – one that would later be renamed after him and converted into a charitable event as part of a foundation’s efforts to do good things for people in his name and honor.

Scott spent November and the first half of December on a low dose, pill form chemo. December 15, 2000, was his last “good” day. Scott died a month later on January 17th, 2001.

Scott taught many of his family and friends life lessons. I will never forget Scott buying four new pairs of dress shoes two weeks before he died. With his incredible optimism, he had every intention on wearing them until they completely wore out.

In December 2000, about three weeks before Scott passed away, he spent some time with Dave Gheesling in the basement of his home recounting how touched he had been by Camp Sunshine and the Atlanta Ronald McDonald House. As DSRCT was not only a rare cancer, but pediatric in nature as well, his peer group (other DSRCT victims, none of whom had been given much a chance of survival) consisted of mere children. Scott, seeking out every opportunity as were each of them in pursuit of a treatment that just might work, had the terrible experience of not only dealing with his own cancer and its impact on his family and friends, but of losing many young friends along the way in this special peer group he had developed. And he asked that if any endeavors were established in the future on his behalf that in some way those efforts would help support Camp Sunshine and the Atlanta Ronald McDonald House.

- Heather Mishkin Stonecipher (February 2007)