The day JonDean Trupe was diagnosed with acute lymphoblastic leukemia (ALL) is a day that his parents, Amy and Marty Trupe, and older brother, Tyler, remember vividly.

Amy, Marty, and JonDean were going through the drive-through at McDonald's in their hometown of Rapid City, South Dakota. JonDean was sitting in the backseat eating chicken nuggets when Amy turned around to check on him and noticed that a blood vessel had just burst in his neck.

JonDean had been getting a lot of bruises then, seemingly from nowhere. And once a pretty mellow baby, he had been crying and whining more frequently.

That afternoon Amy took JonDean to the pediatrician's office for blood tests. The doctor, who usually left the door open for their visits, closed the door. "He said, 'You have to get to Minneapolis by noon tomorrow or your son is going to be dead,'" Amy says.  

Saving his life—twice

Very early the next morning, leaving Tyler behind, Amy, Marty, and JonDean flew to Minnesota and went straight to the University Children's Hospital, now known as the University of Minnesota Amplatz Children's Hospital.

They soon found out that the cancer was not only in JonDean's blood, but it was also in the fluid surrounding his brain and spine. To treat his disease, doctors gave him chemotherapy and cranial and spinal radiation.

But 17 months later, he relapsed. This time he would need more chemotherapy, total body irradiation, and a bone marrow transplant (BMT).

"You want to save your son's life. You don't care. So you do whatever you have to do. We're going to save our son."

The therapies were going to be hard on JonDean's still-developing body, his doctors warned. Research had linked cranial radiation to neurocognitive late effects such as difficulties with learning reading and math, and, generally, the younger the child is at the time of treatment, the more severe the effect.

"You want to save your son's life," Amy says. "You don't care. So do whatever you have to do. We're going to save our son."

"You hear it, but you don't have a choice," Marty adds. "You don't like it, but you have to accept it."  

Tolerating medical complications

The BMT worked, and although he faced several complications along the way, JonDean went into remission.

Today, 14-year-old JonDean is on a new medication routine that helps manage several conditions related to his cancer treatment. He's taking a hormone that helps him grow, as he's experiencing a common late effect of BMTs known as growth hormone deficiency. He's also taking a medication that manages his thyroid dysfunction, another common late effect of childhood cancer treatment.

JonDean has had heart palpitations, a hernia, a Baker's cyst, and bone spurs on his fingers and arm. He has high blood sugar, a weakened immune system, brittle bones, and muscle weakness, all likely as a result of his treatments.

So it's a good thing he has an amazingly high tolerance for pain. When JonDean cut his head on a glass coffee table, for instance, he didn't flinch when alcohol hit the wound. "He didn't want any of the anesthetic," Marty says. "He laid right there and let them sew it up."  

A new learning curve

But JonDean's parents say his biggest struggles after his cancer treatment have been with learning and short-term memory.

"He doesn't remember if he brushed his teeth or not," Amy says. "So we will have to say, 'Well, go back in and feel your toothbrush, and if it's wet, then you did.'"

On the other hand, his long-term memory is great. "It's like all that stuff goes into a file drawer, and if he didn't file it right, it's all in a heap," Marty says. "It's all in there. He just needs to be able to sort it and organize it and then recall it."

Now in middle school, JonDean has an assistant who sits with him in class and helps him with assignments. That wasn't the case in elementary school. He's still years behind his classmates in reading and math.

"They don't make books that he's interested in that he can read," Amy says. JonDean is reading at a "Dr. Seuss level," she says, but he wants to read about hunting and fishing and sports.

"It is frustrating for him," Marty says. "He knows that he's behind, and he knows that it's not the same as for other kids."

At most times, JonDean has a short attention span. But at others, he'll keep an intense focus on one thing and won't drop it. For example, JonDean will take out the Trupes' riding mower and comb their entire 2.5-acre yard for scraps of garbage.

But he's great at tinkering. He loves building things and tearing things apart.

Despite the many difficulties and frustrations JonDean and his family will deal with for the rest of his life, they haven't looked back on their decisions regarding his cancer treatment with any regrets.

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The Growing Up After Cancer section of the Masonic Cancer Center Web site was produced by University of Minnesota School of Journalism and Mass Communication graduate student Nicole Endres. The section's medical content was written under the advisement of Masonic Cancer Center member Joseph Neglia, M.D., M.P.H.