Ben Ostdiek, 13, Acute Myeloid Leukemia

A New Sense of Purpose

Ben Ostdiek didn’t seem to have as much energy as usual. He was a little pale, and his lymph nodes were a bit swollen.  But it was December, and there were lots of things going around.  In fact, Ben’s mom had just had mono.

(2006) – But when Ben couldn’t make it up and down the court at a basketball game, his dad, Don, was worried.  Ben went to school the next day, and his dad made an appointment with the pediatrician for the following day.  A phone call from the school nurse changed the schedule.  “She told us not to wait; she said Ben needed to see the doctor right away,” said Don.

Ben’s appointment was at 3:30.  His doctor did a blood test and literally turned white when she saw the results.  She told Don to take Ben immediately to the emergency room at Texas Children’s Hospital.  “Don’t even stop at the desk,” she said.  “I’ll call ahead, and they’ll be waiting for you.”

By 7:00 that night, they had a diagnosis: acute myeloid leukemia.  The date was January 5, 2004.  Ben’s mother, Barbara, was on her way home from a conference.  She got the news on the plane.

Acute myeoloid leukemia is extremely rare in children—fewer than 500 kids are diagnosed each year in the United States—and even more rare in kids Ben’s age.

From the very first moment, everyone at Texas Children’s gave the Ostdieks the same message:  we can help Ben; we can beat this.  “Never in our lives had we felt more of a sense of purpose,” said Barbara, “and everyone at Texas Children’s just reinforced that.”

Ben began an extremely aggressive chemotherapy treatment regimen.  His immune system was compromised, and he fought off several infections.  He had two trips to the ICU.  He saw virtually every specialist there was to see at Texas Children’s Hospital.  But one of the drugs he was taking—a drug available only through a clinical trial here—put his cancer into remission.

By July 2004, Ben was totally off all treatments.  He and his family knew this would probably not be the end of his fight, but for now he was ready to focus on starting middle school.  When Don asked what they would do if the cancer came back, Ben replied simply, “Dad, we’ll just fight it again.”

And fight it again they did.  By February 2005, the screening tests showed a very small amount of cancer.  Ben was placed on the list to receive a bone marrow transplant.  When none of his family members was a match, a 30-year old woman living in Germany became the donor.  Ben received his transplant on October 21, 2005.

Today, more than a year later, Ben is doing well.  He recently wrote a speech for school on what it means to be alive.  His message?  Life is precious.  Live life to the fullest, but don’t do it foolishly; seize the day, but seize it sensibly.

Barbara acknowledged that it’s been a hard road.  But, she said, “I’m sort of surprised at the few times we felt real despair.  We always felt like we were doing what needed to be done, everything that was possible to be done.  There was always a plan of action, and the doctors were on it.”

Ben’s current plan of action has a lot to do with baseball.  Once determined to become a major league player, he’s now decided that he’d like to manage a professional team.

No matter what his future plans turn out to be, Ben Ostdiek will be out there, living life to the fullest.