Pedaling Past Leukemia

Eight-month-old Isaac’s ruptured ear infection was healed, and he was feeling fine at a checkup three weeks later. But the baby’s pale pallor led his doctor to request blood tests, revealing a health issue far more sinister: infantile acute lymphoblastic leukemia (infant ALL).

“Infant ALL is extremely rare,” explained mom Amy Hilker, “and many oncologists really know very little about it.” But, luckily, Isaac’s doctor at Children’s Mercy Kansas City, Erin M. Guest, MD, specialized in the illness. “She knew the latest developments, trials, drugs, etc., that were available. It was such a huge relief to know that we, as parents, didn’t have to be looking into what new advances were out there. She already knew them!”

The cancer required a very specific, intense two-year chemotherapy regimen requiring Isaac to spend a good portion of that first year as an inpatient at Children’s Mercy. The second year the Shawnee, Kan., toddler was able to get his near-daily treatments at home.

A restricted life

While Isaac remained a social and happy baby throughout, the treatments did delay many of the traditional developmental milestones such as crawling, talking and walking. He lost all appetite, requiring a nasogastric feeding tube for two years. And, being immune-compromised, he basically was homebound.

“No playdates, no church nursery, no grocery stores,” Amy remembered. “The slightest fever meant he would spend at least 48 hours in the hospital for monitoring.”

Not knowing any other way of life, however, Isaac handled the situation without protest. “I don’t recall a time when he complained about having to check back in,” Amy said. “He would just immediately pick up hanging out in the playroom, visiting with the nurses and walking the halls.” Even Isaac’s two older brothers grew to love going to Children’s Mercy, she said.

A month into his treatment, Isaac was diagnosed as being in remission, though the aggressive nature of the disease required the long-term therapy. It also means he is at high risk for relapse. “Thankfully, there has been nothing concerning show up in his blood work,” Amy said.

His true personality finally revealed

Different chemo and other drugs impacted Isaac’s stamina and strength during the two years of treatment. Once it was over, however, and the effects of the chemo started wearing off, Amy said, “We began to see his true personality and energy — which we’re having a hard time keeping up with now.”

Today, Isaac is all boy – enthusiastically devoting his energies to riding his bike and digging in the dirt. And his parents give due credit to the Children’s Mercy staff.

“They took great care of Isaac, but they also took care of his family,” she said. “There was always someone I could call that would listen to me and help figure out what was going on. This was a huge relief to know that we weren’t the only ones watching out for Isaac and his health.”

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