Jasper Chumley’s story: “I felt like the earth had stopped spinning.”
August 26, 2019
Topics: Cancer (oncology)
“It’s been a year since I first heard those dreadful words: ‘Your child has leukemia.’
It was July 2018 and we were in my hometown of Evansville when I took Jasper, then 6 months old, to a follow-up visit after he’d bumped his head. They ran his blood work twice just to make sure there wasn’t a mistake. We were sent to the local hospital, where they told me Jasper needed to be airlifted to Riley Hospital for Children at Indiana University Health. When a nurse gave me an envelope labeled ‘crisis fund,’ that’s when it really hit me.
We got Jasper’s official diagnosis at Riley -- acute lymphoblastic leukemia, a cancer of the blood and bone marrow that affects white blood cells. I remember asking the doctor about Jasper’s chances, and he told me there was a 35 percent survival rate. That was one of those moments when I felt like the earth had stopped spinning.
I went back into Jasper’s room in tears, but when he saw that I was upset, he started crying, too. That’s when I realized what I had to do -- I sucked it up, wiped the tears from my eyes and told him what a good job he was doing. And that’s how we’ve gotten through this whole ordeal, from me living with him inpatient for nearly three months, to abandoning everything back home in Evansville and relocating to Indianapolis.
When we learned that two phases of chemotherapy had not put him into remission, Jasper became the first baby to receive CAR-T cell therapy at Riley, [a state-of-the-art treatment that modifies patients’ immune T-cells to seek and destroy the cells where the leukemia lives]. It worked! But the only way to ensure a cure was a bone marrow transplant. That was the hardest thing I’ve ever done, watching my child become sicker than ever just to save his life.
More than 100 days post-transplant, Jasper, now 20 months old, is cancer free. He’s still on immune-suppressing drugs, which means no going out in public, and he won’t be considered fully recovered until nine months to a year after the transplant, but we’re hopeful that our darkest days are behind us.
I’m so thankful for Jasper’s team of doctors and all of the support staff at Riley. Even though my little man had to spend his first birthday and Christmas in the hospital, the Child Life team made sure it was special. Music therapy was his favorite, and art therapy helped me navigate this journey as a single mom. Our world was turned upside down, but I can’t say enough good things about the people at Riley.”
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