Heading to the emergency room was frightening enough.
But Jasper Lenglade and his family never anticipated the nightmare that would unfold when they arrived at Riley Hospital for Children at Indiana University Health.
Jasper, a 10-year-old Center Grove boy, had come to the hospital with soreness in his joints and headaches. His parents suspected he was suffering from higher-than-normal blood sugar, a precursor to diabetes.
But just days later, he was confined to a hospital bed, barely moving. Chemotherapy was working its way through his body, killing leukemia cells in his blood. At the same time, a mysterious illness that doctors suspected was meningitis also was attacking him.
Story continues below gallery
“The first two weeks were the scariest time that I’ve ever spent in my entire life,” said Jen Lenglade, Jasper’s mother.
From that hellish start, Jasper has emerged through the worst of his treatment. His acute lymphoblastic leukemia is nearing the maintenance phase, meaning that the leukemia is all but gone and a milder chemotherapy will be used to keep it from coming back.
His hair is growing back, and his strength is coming back.
Jasper will “ring out” — hospital parlance for finishing treatment — in July 2019. It’s hard to think about something so far off, so the family has focused on getting through the next week.
“There’s a light at the end of that tunnel,” Jen Lenglade said. “We’re getting closer to that. Every time we hear a kid ring out, we just think that will be us someday.”
The long hospital stays, constant medication and up-and-down nausea have been difficult for Jasper. But in the Riley Hospital staff, as well as the other patients, the entire family has found comfort.
Cooper Davis, a 12-year-old Greenwood boy who has been in treatment for B-cell acute lymphoblastic leukemia himself, was in a room two doors down from Jasper when he was first admitted.
Cooper helped school Jasper on what to expect, encouraged him to be strong and helped him to be less scared.
“There’s that bond with all of the kids up there,” Jen Lenglade said.
Jasper, in turn, has tried to use his experience to help others. He convinced his parents to allow him to be part of a clinical trial for an experimental chemotherapy that his doctors said would still be safe for him.
According to the Leukemia Research Foundation, fewer than 5 percent of leukemia patients enlist in these trials, which are critical for learning more about treatment.
The medications that Jasper is taking are being tracked by the hospital, and results of how they treat his cancer are shared with research institutions around the world.
“It will help other kids going through what I went through,” Jasper said. “Why wouldn’t I do that to help other kids?”
Jasper had been experiencing a rash of injuries and poor health for nearly a month before he was diagnosed with leukemia. During his season with Center Grove’s youth basketball league, he injured both of his feet on separate occasions, requiring him to wear a protective boot. At one point, he was on crutches while he healed.
He started having headaches that grew worse and worse. His joints hurt, and just didn’t seem to ever feel well, Jon Lenglade said.
The symptoms seemed to reach a breaking point in late February, when Jasper was sick enough to miss some of his basketball games and a few days of school.
“He woke up on March 1 and was incoherent,” Jen Lenglade said. “His head hurt, and he could barely talk.”
Jasper’s deteriorating health grew more and more concerning. Based on his symptoms, his parents thought that he might be in the initial stages of diabetes.
They checked into the emergency room at Riley Hospital for Children, and the nurse on staff thought his symptoms sounded diabetic as well.
But as the medical staff ran more medical tests, his blood sugar levels were normal. At the same time, they found a high number of proteins called ketones in his urine, prompting more intensive blood testing.
After being in the hospital for more than five hours, doctors came back with their sobering diagnosis.
“I remember the time exactly — it was 3:38 p.m. They came back in the room, and said they were pretty sure our son had leukemia,” Jen Lenglade said. “The only thought was, ‘That’s not why we’re here.'”
In a matter of hours, they met with an oncologist, and Jasper was admitted to the hematology wing of the hospital. The next day, doctors took a spinal tap and biopsied his bone marrow.
His bone marrow was so compacted from the cancer cells that it was difficult to take a sample, Jen Lenglade said. The tests revealed that Jasper had B-cell acute lymphoblastic leukemia. In children, it’s one of the most common forms of leukemia, and 98 percent of those who have the disease reach remission, according to the National Cancer Institute.
Because he was only 10 years old, his case was considered high-risk. Surgeons implanted his chemotherapy port the next day, and his treatment started immediately.
“It happened so fast. You can’t wrap your head around it,” Jon Lenglade said.
For the first two weeks of his treatment, Jasper barely moved from his bed at Riley Hospital. The chemotherapy had wiped him out physically, and doctors feared that he had contracted an infection as well, so he was put on a rigorous dosage of antibiotics and other medication.
Under normal circumstances, Jasper could have gone home three or four days after his chemotherapy treatment. But that wasn’t possible with the combination of the infection and his weakened immune system.
He ended up spending 23 days at Riley Hospital, including his 11th birthday. His parents tried to make it up to him by getting carryout steaks from St. Elmo’s Steakhouse and bringing it into his room.
Part of his treatment plan includes regular doses of steroids, so Jasper’s appetite is insatiable. When he first started taking the medication, he was eating every two hours around the clock.
Though his hunger has waned slightly, he’s still eating almost all the time.
“You can barely stop me from eating,” Jasper said.
Jasper has received four in-patient sessions of high-dosage chemotherapy, with the final round of this treatment in late August.
“Where we stand now, unless he gets a temperature or gets sick, he does not have to go back into the hospital for an inpatient stay,” Jon Lenglade said. “Everything is going as planned.”
He’s currently in his final nine-week cycle, going to a chemotherapy clinic one time each week for infusion and taking different medicines at home.
His family expects that by mid-November, he’ll be in maintenance. At that point, he’ll only need to go into the clinic once per month.
“Things should calm down by then. He should be able to play football and sports after that,” Jen Lenglade said.
For Jasper, being unable to play football, basketball and other sports has been difficult. But the Center Grove community has stepped in to help support him and his family, even though he cannot participate on the field.
People brought the family dinner every night following the diagnosis. An onslaught of calls, texts and e-mails came for weeks after that.
Center Grove football players wrote Jasper notes, and came to visit him.
“You think that Center Grove is a huge school and there’s a lot of people around here, but it’s so tight-knit. As soon as they found out one of their own was sick, it was like it was their kid,” Jen Lenglade said.
The Center Grove Bantam Football League, which Jasper had played in, hosted a special cancer awareness day in September honoring him and another Center Grove boy with leukemia, Shelby Howard. Though he couldn’t play, Jasper was invited by league officials to help coach a team.
“It gives you a different perspective on playing. It’s been fun,” he said.