With an immune system weakened from chemotherapy, it wasn’t safe to go outside.
So as Shelby Howard labored through a full year of treatment for leukemia, his parents brought the outdoors to him. Emptying out the dining room in their rural Bargersville home, they created a playroom for him.
They filled a children’s pool with kinetic sand that he could safely dig in. He could play with his trucks, tractors and remote-controlled cars without fear of getting sick.
“He loves playing in the dirt so much we had to make something he could play with,” said Shelby Howard, the younger Shelby’s father. “He’s an outdoors kind of kid, and that was the hardest thing about the first year.”
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Shelby spent more than a month in the hospital as chemotherapy killed the cancer but left his immune system ravaged. His white blood cell counts would get so low doctors couldn’t risk him leaving the protective environment of his room, and he had to spend his sixth birthday in the hospital.
But two years after being diagnosed with acute lymphoblastic leukemia, the 7-year-old is making up for valuable childhood time lost.
“We’ve been able to breathe this year, finally. The first year is so full of emotions and fear that he’s going to get sick,” said Kelly Howard, Shelby’s mother. “Now, it’s better.”
He pilots his remote-control cars over hills and through fields. When the family can get to their wooded lake property, they go camping, swimming and fishing. The biggest fish he ever caught was a 15-pound catfish this past summer, his father said.
“We don’t have any video games, so the kid’s outside most of the time,” Shelby Howard said.
He just started his first year of tackle football with the Center Grove Bantam Football League, where he’s an offensive lineman. He is playing soccer this year, as well.
“Doctors want him doing that kind of stuff. The more active they can be, it helps with all of their joints,” Shelby’s father said. “The medicine he takes, it can make him stiff and slows him down. But he doesn’t seem to care; he pushes right through it.”
It was small changes in the way Shelby played that led doctors to his diagnosis in 2014.
His symptoms were perplexing from the start. He would wake up with a fever one day, then his temperature would be gone the next — a pattern that repeated throughout a few weeks.
The 5-year-old’s gait had changed, he had leg pain and his mother noticed he was running oddly. Then his stomach started to hurt.
“It was like he had a constant cold. He’d go through periods of being sick and not being sick, and he was slowing down on the football field,” his father Shelby Howard said.
Sheby’s parents had taken him to the emergency room after his health got worse, but the staff there thought he just had a cold and would be OK after a few days. When he didn’t get better the next week, they took him to his pediatrician.
Immediately, Shelby’s doctor noticed that his skin color was off. Blood tests left no doubt that he had leukemia, and he was admitted to Riley Hospital for Children at Indiana University Health that night.
Shelby was diagnosed with B cell acute lymphoblastic leukemia, a common form of the disease. If caught and treated, it has a five-year survival rate of 90 percent, according to the National Cancer Institute.
Still, Kelly and Shelby Howard had a hard time processing that their son had cancer.
“You go from knowing zero about leukemia to becoming an expert pretty fast,” the elder Shelby Howard said.
Shelby’s medical team recommended a treatment plan completed in four waves. For the first year, he had weekly chemotherapy at Riley Hospital, then it backed down to monthly visits to the hospital.
All the while, he was taking monthly doses of a cocktail of chemotherapy drugs.
The process would take three-and-a-half years.
For a kid who loved being outdoors, being trapped in the house for a full year was akin to torture. The treatment forced Shelby to miss about three months of kindergarten, but he was able to make up the work he missed.
The family had a Jeep with a covered top, so that they could go off-roading in the woods without Shelby being exposed to dirt and germs.
“That was the main goal of ours through this whole thing — to keep everything as normal as possible, just finding different ways to have fun,” Kelly Howard said.
With the most intensive part of his treatment done, Shelby is in the maintenance phase. He takes daily doses of chemotherapy drugs to prevent any remaining leukemia cells from gaining even a small foothold in his body, and takes monthly steroids.
“The second year has been easier. His appointments are spread out, and his blood counts don’t vary like they used to,” his father Shelby Howard said.
If the schedule stays on track and Shelby doesn’t suffer any setbacks, he’ll be finished with treatment in the summer of 2017. The date had seemed so far away when he was first diagnosed, but is much more tangible now.
“We’re counting down the months. It’s so close,” his father said.