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Leukemia patient Bryce Maretzki, First of two parts In 12 minutes by the clock on the wall, the bone marrow transplant was over, the culmination of a six-year ordeal for Bryce Jay Maretzki.
We shivered as we watched the pink liquid marrow drip into Maretzki’s body in his attempt to rid it of a debilitating cancer called chronic myelogenous leukemia. Were we chilled from the cool, purified air that flowed through his room on West Penn Hospital’s seventh floor? Or were we simply overwhelmed with the possibility that the genetic defect called the Philadelphia Chromosome would finally be replaced with clean, healthy bone marrow? Maretzki, 35, had been unable to find a perfectly matched bone marrow donor despite years-long searches that included his father’s emotional return to Germany in an unsuccessful attempt to locate a family member who had survived the Holocaust. There was time for Andrew Maretzki’s search, and the hunt for every hope that medical science could offer, because chronic myelogenous leukemia is a slow-growing cancer. Doctors were able to keep leukemic cells at bay with mild doses of chemotherapy. But without any compatible donors, Maretzki knew he needed a miracle to survive, a miracle of science. Maretzki and his family hoped that that dream was being realized on Friday, March 13, when he lay in his hospital bed drowsy from sedatives to keep him still — yet very much aware that this time he could possibly start looking into a long, healthy future. He had sought out an Allegheny University of the Health Sciences surgeon who in the past year had perfected a technique with poorly matched bone marrow that limits the risk of rejection. Dr. Suzanne Ildstad, the surgeon who made world headlines in 1996 with the transplantation of a baboon’s bone marrow into the body of a human AIDS patient, is convinced that her method using what has become known as the "facilitator cell" could eventually cure myriad diseases, including leukemia. Twenty-three transplant recipients who underwent Ildstad’s technique had died because their leukemia was so far advanced, but the trials were considered successful because the bone marrow had engrafted. Maretzki was her 24th patient. Shortly before a nurse brought in the new bone marrow, the closest match found in a worldwide search of a computerized bone marrow registry of more than 5 million people — but not close enough by previous transplant standards — West Penn’s transplant coordinator Renee Yasko handed Maretzki a get-well card. It was from the anonymous donor, known only to be a mother of two. Doctors decided this was the only choice they had, even though a donor of the opposite sex could create more health problems for the recipient. "My life is beginning again," Maretzki said in a barely audible, woozy voice. "As a young woman!" his mother, Audrey, almost shouted. "Now, you’ll see what it’s like!" At 5 feet, 10 inches, Maretzki’s weight had dropped to below 125 pounds after a week of intensive chemotherapy and radiation to kill his diseased bone marrow, making room for the healthy batch. He looked small and pale, even against the white sheets. We sat transfixed on the beeping, squiggly green monitor lines — an exquisite hum marking a rebirth. I was allowed to share this moment as Bryce’s friend as well as a reporter; also there were his mother, Audrey, his girlfriend, Samantha Roth, and Post-Gazette photographer Robin Rombach. When it was over, we hugged, cheered and cried, then celebrated with white pizza and a chocolate ice cream birthday cake decorated with a buoyant Mickey Mouse. Maretzki’s brother Craig arrived in time for us to sing an off-key rendition of "Happy Birthday" in celebration of his new life.
The pervasive feelings in the room were of anticipation and relief. Yet no one could answer the overriding question: Was this the scientific miracle Maretzki needed? The circuitous route to this defining moment began on June 4, 1992, when sudden, sharp stomach pains forced Maretzki to stop his red Nissan Sentra at the side of the road. An avid, long-distance runner, Maretzki was on his way to the God’s Country Marathon in rural Potter County. He gulped some water. He chewed a roll of Tums. The pain intensified. He felt weak and dizzy. Maretzki was then an urban planning and policy specialist who kept in shape by running each morning at 4 near his Dormont home. But now, he thought that he was having a heart attack. He cannot remember how he managed, but he drove to Du Bois Regional Medical Center, where he crawled into the emergency room. Doctors took an electrocardiogram. His heart was "runner’s strong." They tapped, listened and pummeled while waiting for the results of a blood sample. Immediately they knew from Maretzki’s excessive white blood cell counts that his body was incapable of effectively fighting off infection. Maretzki called an aunt and uncle to drive the several hours to take him to West Penn. His meticulously kept running log showed that he had run 1,026 miles since the beginning of 1992. It then marks the day with: "Leukemia diagnosed 6/5." From that point on, Maretzki’s life became a tangle of medical terms and possibilities, all in his search for a cure of the disease that is diagnosed in about 5,000 American adults a year. He soon learned that his only hope was to get new bone marrow, the soft, spongy material responsible for making blood cells. Yet finding perfect bone marrow was a much more complicated process than matching blood types. Six antigens, or proteins, must line up with the recipient’s marrow. Ideally his brother Craig, now 33, would be the best, but the brothers’ bone marrow did not have the same antigen makeup. If Maretzki’s body rejected the new bone marrow, he could die. Doctors tested his parents, their siblings and cousins. Nothing. Maretzki’s father Andrew blamed himself. Bryce’s mother, Audrey, 63, daughter of the late Jay Neff, superintendent of the old Dormont school system, is descended from the Pennsylvania Dutch. Andrew, 72, is a German Jewish immigrant. The merging of the two families gave Maretzki and his brother a mixture of cells hard to match. Chronic myelogenous leukemia is a disease known for its genetic chromosome abnormality, but the cause is still unclear. "I’m the one who is at fault," Andrew Maretzki insisted, shaking his head. "My genes are very difficult to match because my heritage is very mixed. For example, I don’t know where my mother’s family originated. Maybe they were Russian." He knew intellectually that there was no blame. Researchers have long known that while the Philadelphia Chromosome is genetic, its origin is unknown. "Dad gets frustrated because he can’t do anything to solve this, and this is one of his children," Bryce Maretzki said. "We never talked much about this, but he knows that Craig has the same genes, and Craig doesn’t have leukemia. It’s not his fault. It’s no one’s fault." Until now, the boys’ father had never talked about his painful past. Andrew Maretzki was 12, his brother 13, when his family moved them from Berlin to a school in southern Germany in 1938. The German government threatened to close the school if the two Jewish students remained. They then were sent to England and, finally, the United States. "My family was pretty well wiped out in the Holocaust," he said. "But I knew I had to go to Europe to see if I could find anyone. I knew it was going to be impossible. I had to try." He went to Berlin in the summer of 1992. "I started digging a little bit. It was just after the [Berlin] Wall had come down, so it was very confusing." Officials sent him to a castle outside Berlin where records had been stored during the war. Some family members had settled at the Polish-German border, others had moved to Berlin. "All that we knew was that my grandfather was a doctor in Berlin," Andrew Maretzki said. He pored over the remnants of papers, but in the week he was there came across no familiar names, no remote connections. "There was this old man who was in charge, and he was very helpful, but there was nothing," he said. Doctors then recommended that the Maretzki family organize bone marrow drives. Several thousand people signed up in Davis, Calif., State College, Honolulu and Pittsburgh. The locales were picked because Craig was a veterinarian at the University of California at Davis; Audrey, a researcher and professor with a specialty in nutrition at Penn State University; and Andrew, a plant biologist, ran a research lab at the Honolulu Sugar Planters Experimental Station. Bryce Maretzki’s running buddies set up drives, along with his colleagues at ACTION Housing, where he handled homeless housing issues. They found no one. Exercise — biking and running — was the only relief he found as he thought about the frightening prospects. Maretzki had been running since his high school days in Honolulu where the family lived, through his undergraduate days at Penn State and his studies for a master’s degree in public policy at the University of North Carolina. He was driven by the sport; now he also focused the same kind of intense energy into being cured of the disease. Within weeks after the diagnosis, Maretzki and his brother undertook the massive research project from opposite ends of the country. This was 1992; the Internet was only a fledgling resource. At Davis, Craig Maretzki haunted the medical library. His desk and dining room table overflowed with stacks of papers describing so-called protocols, or medical trials. Suzanne Ildstad was a transplant surgeon and researcher at Children’s Hospital of Pittsburgh in 1992. She studied with transplant czar Dr. Thomas Starzl and her mentor, Dr. Richard L. Simmons, who was chairman of the University of Pittsburgh’s department of surgery. Ildstad, now 46, ran every morning near her home in Fox Chapel. She found that the 40 to 60 minutes with her Airedale, Emma, gave her time to think clearly about her patients and research. She wanted to take solid organs, like hearts and lungs, and put them into recipients while reducing the likelihood of rejection without drugs. If only it were that simple. "One morning, while jogging, I thought about that, and about the cells in our body," Ildstad said. "It seemed that in nature God would have a system. What was that system? There must be a cell that would assist the graft in taking." Using that theory, Ildstad wrote a 25-page, single-spaced proposal for a National Institutes of Health grant. She wanted to prove she could increase successful engraftment and reduce rejection in bone marrow as a first step to using this procedure for solid organ transplants. Her first patients would be those with leukemia who needed bone marrow transplants to survive. Ildstad was moving forward with her research, but it was still too early to help Maretzki. By 1994 doctors told him he needed to do something more drastic to stave off the leukemic cells that were proliferating. If his leukemia got any worse — that is, moved from the chronic to a "blast" stage — he would die. Surprisingly, Maretzki had been feeling good. He ran the Honolulu Marathon in December 1992 and then the New York City Marathon the following fall. The notes in his running logs indicated he was strong. Doctors suggested he cut back on his rigorous exercise. He ignored them. "It helped clear my head," Maretzki said of the running. In New York, he qualified with a 2:58:24 to run the Boston Marathon the following April 1994. But he soon realized that Boston would have to wait. Because Maretzki had not found an appropriate protocol or a donor, doctors insisted he try a radical drug called inteferon alpha. It had been proven successful with some patients in attacking leukemic cells. The chemical was too harsh for Maretzki’s system. He couldn’t keep down food. His whole body ached. The intolerable bone pain that followed forced Maretzki to say, "Stop!" For the first time, the leukemia seemed to be defeating him. Craig Maretzki resumed his research, taking his brother to research sites at hospitals across the country. "We knew then we had nothing left to do but to look at the transplant option," Craig said. Only they still had no donor. About this time, researchers at the University of Pennsylvania were trying something new, called an autologous transplant, with a drug that was designed to target and wipe out the Philadelphia Chromosome. Maretzki agreed to become the seventh patient in that medical trial. In Philadelphia, he underwent chemotherapy to clean out his system as much as possible. Bone marrow cells were removed from his pelvic bone. Then the cells, frozen for awhile, were thawed and returned intravenously. Doctors said they didn’t know what to expect for the long term but that the procedure at least would give Maretzki time. How much? No one knew. To everyone’s delight, he rebounded quickly. Doctors conceded that Maretzki’s exercise schedule made him a healthy specimen. He felt so good that he returned to his running and workouts within a week, even though doctors had not yet removed the plastic device inserted in his chest for injections. After showering at his local health club, the intravenous line became infected. His recovery slowed. Eventually, he began walking, then running again. Convinced that his son was cured, Andrew Maretzki organized a family celebration in Switzerland in 1996. So sure that his leukemia had been destroyed, Bryce stopped going for regular blood tests. "I don’t know. I was just feeling great," he said. By now, Maretzki, who also taught public policy at Duquesne University School of Law and the University of Pittsburgh, had left ACTION Housing to become a special assistant for policy and planning at the Allegheny County Department of Human Services. Craig pushed his brother to undergo blood tests. His parents called repeatedly. In August 1997, Maretzki agreed to appease his family by going for examinations at West Penn. The results were devastating: Doctors found the Philadelphia Chromosome. He still had chronic myelogenous leukemia; only a transplant would bring a cure. Nothing else. The slow-growing leukemic cells were proliferating, and drugs would no longer be a good enough antidote. By now, Ildstad had received NIH approval to conduct bone marrow transplant trials on patients in highly advanced stages of leukemia. The Allegheny University of the Health Sciences in Philadelphia had recruited her to head its new Institute for Cellular Therapeutics in 1996. Technology had caught up with scientific theories, enabling Ildstad and her staff to sort out the rare (.2 percent of all cells) facilitator cell, which then could assist the stem cells in engraftment. For Ildstad, the concept was as simple as the gardening she loves so much: The stem cell was like the bulb of a flower. If you put it in rich soil, it will root, grow and thrive. By finding facilitator cells for the stem cells, the environment would be just right for the bone marrow to take hold, grow and thrive. Dr. Richard Shadduck, 61, director of the Western Pennsylvania Cancer Institute and Maretzki’s doctor, pointed the brothers to Ildstad’s research. Craig Maretzki searched sources on the Internet. "As a patient, I had become so reliant on technology and the advances that were being made," Bryce Maretzki said. "Three years ago, I didn’t have this option available to me, and now, here was Dr. Ildstad doing something that was right for me." His leukemia was still manageable, and he was otherwise healthy, except that the Philadelphia Chromosome still lurked in his system. The brothers discussed the options. They concluded: Bryce Maretzki was to be Ildstad’s first patient with a chance for survival — maybe even a cure. Part Two: Bryce Maretzki and his doctors cope with the aftermath of his bone marrow transplant. Post-Gazette health writer Ellen Mazo has been comparing running notes with Bryce Maretzki for the past five years. But Mazo, a 10-time marathoner, cannot keep up with the fast-paced Maretzki, who has run 29 marathons. Robin Rombach is a staff photographer.
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