JonDean's Story

Young Acute Lymphoblastic Leukemia (ALL) Survivor Stays Brave Through Transplant

Shortly before his second birthday, JonDean Trupe seemed to be sick all the time. As his parents, Amy and Marty recall, he had no appetite, his tummy hurt, he frequently had nosebleeds and a low fever. For JonDean, "everything was an owie." Particularly alarming was the fact that the toddler was often covered with bruises.

The situation came to a head one day at lunchtime, in the parking lot of the McDonald's restaurant in Rapid City, South Dakota, where the Trupes live. "We watched a blood vessel in JonDean's neck pop," says Amy. The shocked parents watched helplessly as a large blood blister formed spontaneously on their son's neck. They immediately scheduled an appointment with Dr. Mortimer, their family physician.

After reviewing the results of a blood test, Dr. Mortimer broke the worst possible news to Marty and Amy: "We think your son has leukemia." He referred them to the University of Minnesota Hospital, and they left immediately for Minneapolis. At the U, JonDean was put in the care of pediatric oncology fellow Dr. Brenda Weigel under the supervision of oncologist Dr. Joe Neglia. On October 5, 1996, just weeks after his second birthday, he was diagnosed with acute lymphoblastic leukemia, or ALL.

Marty says the doctors told them that ALL was "the best kind of leukemia to have" - it responds the most favorably to treatment, with a success rate of over 70 percent. Unfortunately, however, leukemia cells were found in JonDean's spinal fluid, and central nervous system disease carries a worse prognosis. His oncologists put JonDean on a three-year treatment protocol, with three weeks of radiation to his spine and skull, to be followed by chemotherapy.

Throughout treatment, JonDean was plagued with infections and low blood counts. Finally, in May 1998, seventeen months after JonDean was diagnosed, Dr. Weigel had more tough news for the Trupes. "We think we see some leukemia cells in the blood." She wanted to do a test called a bone marrow aspirate to confirm her suspicions. The marrow test revealed that JonDean's body was again full of leukemia. He would need a bone marrow transplant.

According to Marty, the route to transplant was "a scary ride." In July, JonDean developed a serious infection in his blood. He was admitted to Rapid City Regional Hospital. The Trupes called Joe Neglia in the middle of the night, and Joe helped arrange for JonDean to be airlifted to the U. JonDean spent several days in intensive care at University Hospital. Marty remembers, "They had a hard time getting him stabilized." This episode stands out for the Trupes as the most frightening of all, the time they came the closest to losing their child.

The summer he received his transplant, two wonderful new people joined the effort to cure JonDean's leukemia. The first was Dr. Paul Orchard, a physician on the U's blood and marrow transplant service, who managed the transplant regimen, and who has since become fast friends with JonDean. The second was a generous young man from Long Island, New York, a volunteer from the national registry, who donated his marrow for transplant. Although JonDean's whole family was tested, even his nine-year-old brother Tyler, no one was a close enough match to donate marrow. The Trupes recently spoke with JonDean's donor by phone and had a chance to thank him. The registry requires a waiting period of one year after transplant and the consent of both parties before recipients and donors can meet each other.

JonDean received his bone marrow transplant on August 21, 1998. Because the marrow was from an unrelated donor, the likelihood was increased that he would suffer from graft versus host disease, a condition that is caused when the body's immune defenses are mobilized against the donor marrow. After transplant, JonDean did acquire acute graft versus host disease, and he is now being treated for the chronic form of the disease, which affects his skin and his gut, making it difficult for him to eat.

It is too soon to tell if JonDean has been cured of his leukemia, but his life and the lives of his family have been forever changed by his experience with cancer. Through the whole process, JonDean has been a brave patient. Amy says, "The nurses love him. He just sits right up and doesn't whimper. When he was two, he didn't know any better, and he still doesn't know any better. This is life to JonDean."

Because of the risk of infection, Amy and Marty do not take their son to church regularly, but, Amy says, "JonDean knows God; He's seen his hand come out of the sky and reach for him." JonDean concurs. "I seen an angel," he says. Takes one to know one, JonDean.