"Being a basketball player, I thought I had sprained my knee, so I tried to ignore the pain," explained Mollenkopf. "After a while, I noticed a little lump below my knee; I still didn't think it was serious." But the pain got worse and Mollenkopf, after a couple of months, elected to discuss the problem with his parents, Doug and Brenda Mollenkopf.
"A friend suggested that we take him to a physical therapist. The therapist examined him and a local orthopaedist examined him," explained Mrs. Mollenkopf. A few days later, at the suggestion of the orthopaedist, the talented musician found himself in the office of Ronald P. Williams, MD, PhD, associate professor of orthopaedics at the Health Science Center.
"Dr. Williams knew immediately what the problem was—osteosarcoma—a tumor that had grown on the bone," said Mollenkopf. "All I heard was him talking about cancer. I was really in a state of shock and felt numb." Sarcomas, cancerous tumors that infiltrate bone and/or tissue, are diagnosed in about 9,000 persons in the United States each year. Those that arise in bone affect 2,500 to 3,000 people annually. Prior to this decade, treatment usually included amputation of the limb or nonsurgical treatment with chemotherapy or radiotherapy. Dr. Williams was among the first orthopaedic oncologists in San Antonio to perform 'limb salvage,' or reconstructive surgery, as an alternative to amputation.
Essentially, Dr. Williams' young patient had to choose between a knee fusion, an amputation or a risky limb salvage procedure coupled with chemotherapy. The knee fusion would have eliminated any movement at the joint--his leg would have been perpetually straight. "My second option was an above-the-knee amputation, which meant no control over the prosthesis that would replace my lower leg," said Mollenkopf. Options one or two would have dashed Mollenkopf's dreams of becoming a professional organist. "To play the numerous organ pedals, you really need both legs and control over both feet and ankles. Since I would not have been able to play the organ with a fusion or amputation, I chose the limb salvage procedure," he explained.
Just days following his diagnosis, in February 1991, Mollenkopf began intravenous chemotherapy treatments. "I'd have to stay in Santa Rosa Children's Hospital an average of three to five days for the treatments. I'd get very sick for a couple of days after each one. I hardly had any energy. After a few treatments, I lost all of my hair and about 30 pounds. There were sores in my mouth, and basically I slept a lot," Mollenkopf said.
Two months later, despite several chemotherapy treatments, Mollenkopf's tumor still appeared to be growing; Dr. Williams scheduled the limb salvage surgery. The procedure involved removal of the tumor; about 6 inches of the tibia, the larger leg bone between the ankle and knee; and the knee joint, which was replaced with a prosthesis. (See x-ray.)
Two weeks following the successful surgery, Mollenkopf again began chemotherapy treatments. Despite the fatigue, nausea and other side effects of chemotherapy and major surgery, he continued to pursue his studies and musical interests at home and at the hospital. A keyboard, given to him by his church, was delivered to his hospital room so he could practice. Mollenkopf's tenacity enabled him to graduate with his high school class in May; Dr. Williams attended the ceremony.
For the next several months Mollenkopf embarked on a moderate physical therapy regimen and continued chemotherapy. He had deferred his Trinity University enrollment for one year to concentrate on recovery. By February 1992, the young patient was celebrating the end of chemotherapy treatments and absence of recurring cancer. "I always felt like I was going to beat it. I prayed earnestly for it," added Mollenkopf.
There was still a problem, though. His surgery had required a skin graft over his knee, and on the graft was an area that refused to heal. Dr. Williams advised a second skin graft, and Mollenkopf returned to the hospital for the surgery.
More bad news lay ahead for the musician who was now counting the months before his enrollment in college. Routine preoperative x-rays revealed spots on his lungs.
"Dr. Williams came into my room to tell me the news. He said the spots might indicate the cancer had metastasized in the lungs. Once again I was kind of numb. Then I was angry and scared. This meant more intense chemotherapy, and now I was going to have a lung biopsy, a thoracotomy, instead of a skin graft," said Mollenkopf.
"One physician, the thoracic surgeon, said there was a 99.9 percent chance that the spots on Jonathan's lungs were cancer," added Mrs. Mollenkopf.
Although the diagnosis was bleak, this patient's fate was about to take an upward turn. "It was quite a miracle—the spots turned out to be fatty emboli!," said a gleeful Mollenkopf. The discovery of particles of fat in his lungs rather than cancer was followed by another amazing event; the open area on the organist's knee began to heal, and a second skin graft was not necessary. By the time he enrolled at Trinity in August, his hair had started to grow back, he was able to walk across campus with the assistance of a cane and he had the energy to devote more hours to organ practice.
After the first week of classes, however, the freshman discovered a cyst was developing below his left knee joint. Fearing the cancer had returned, Mollenkopf wasted no time before calling Dr. Williams. Another trip to the operating room revealed an irritation caused by cables used to secure the knee prosthesis and the presence of several different strains of bacteria. There was no sign of cancer. A few days later, William C. Pederson, MD, clinical associate professor of orthopaedics at the Health Science Center, grafted part of Mollenkopf's stomach muscle over his knee to avoid further irritation from the cables.
Two more surgeries loomed in Mollenkopf's future. During his sophomore year, another knee infection prompted Dr. Williams to remove the knee prosthesis, clean out the infected area and vigorously treat it with antibiotics. When the infection had cleared, three months later, Mollenkopf received a second knee prosthesis.
In a wheelchair, with his leg in a cast and propped up, Mollenkopf returned to classes within weeks of the prosthesis procedure. "My organ teacher, David Heller, was very understanding," said Mollenkopf. "When I came back to class I devised a technique of playing the organ with one foot while my left leg was propped up."
Over a few months, he graduated from a wheelchair to crutches. The cast was removed, and gradually he was able to walk without any aides. For more than five years he had relied on supports.
Neither numerous surgeries, painful scars from skin and muscle grafts, frequent absences from classes nor inability to practice the organ would stop the ever-optimistic Mollenkopf from achieving his goal. In May 1996, four years following his enrollment, he gave his senior organ recital at Trinity's Margarite B. Parker Chapel—he used both legs and feet. Two days later he graduated.
Today, Mollenkopf is pursuing a master of organ and church music degree at Indiana University. "I'm concentrating on the organ to prepare for work in the church. I'm also studying conducting and the history of church music," he added.
"My leg is fine. On the twenty-fifth day of each February I celebrate another year of being cancer free—on that day, six years ago, I was diagnosed. But at least once a year for the rest of my life I'll see Dr. Williams for follow-up," he added.
Much of Mollenkopf's success, he maintains, can be attributed to God and to the support given him by family, friends and physicians. "If I were advising someone else with a similar problem, I'd tell him or her not to be afraid to rely on friends and the medical profession for emotional support. Dr. Williams was very concerned about my needs—answering questions and coming up with the right kind of limb salvage procedures. With each problem, especially the infections, the desirability of amputation increased. He never pressed me to do any procedure but always presented the options. He explained things but never scared me away. Dr. Williams came up with ideas beyond the norm, so I could still play the organ and do what I wanted to do."