Diagnosed with ependymoma, a type of brain tumor, Honored Kid Jeremy is well-known for going with the flow through surgery after surgery. Now the 11-year-old Minnesotan will be winning everyone over with his bright smile and easygoing spirit in Chicago — he and his family just got the news that he’s been accepted to a clinical trial in the Windy City. Read on to learn more about Jeremy’s amazing story thus far and the chapter that’s just beginning.
Jeremy, in the black shirt, relaxes with his parents and brothers during a St. Baldrick’s event.
Jeremy bikes and swims and rollerblades. You’d never know that he has a brain tumor — unless you saw the scar on the back of his head, said his mom, Carol.
In fact, when Jeremy got home one day after his third brain surgery, he asked his mom if he could ride his bike.
“I’m like, ‘Brain surgery yesterday, riding the bike today? No,'” she recalled.
Diagnosed with recurrent metastatic ependymoma, the resilient 11-year-old has been through five brain surgeries and two rounds of radiation. He faces pain nearly every day and challenges with his memory and school, but he’s still going strong.
“He is doing pretty amazing, considering what he has going on,” his mom said. “He gets a little tired earlier now and some things are a little harder for him now, but all in all, he’s doing pretty well.”
Jeremy poses with the mask that he wears during radiation treatment.
Jeremy was first diagnosed in December 2012, after he told his mom he didn’t feel well and she noticed he couldn’t hold his head up. They called their doctor, who advised them to take Jeremy to the emergency room.
“We’re kind of a go-with-the-flow kind of family. We don’t panic,” Carol said, explaining that they thought he had a flu bug. “You don’t think, ‘Oh, he’s got a brain tumor.'”
A few hours later, Jeremy was getting an MRI. That’s when his mom started getting nervous.
It was a surreal experience. “It doesn’t even click with you. It’s just, ‘OK.’ You don’t even have time to think about it,” Carol said, reflecting on those moments.
She remembered being utterly calm, which is unusual for her. “I’m kind of loud, kind of boisterous. I’m an extrovert. So, I’m just sitting there taking all this information in from him. Even then, you’re like, ‘They’ll just take it out and it’ll all be fine.'”
Jeremy concentrates as he scales a play structure.
The doctors did take out the tumor during a nine-hour surgery. That was Jeremy’s first surgery. Since then he’s been through four more and they’ve all gone off without a hitch.
Despite those efforts, the tumor has continued to grow, and in March they got the news that Jeremy’s cancer had recurred for the third time.
“We’re kind of running out of options, because we know things like chemotherapy haven’t been very effective,” Carol said.
There isn’t much information out there about ependymoma tumors and few advances in terms of treatment. Carol wants to change that.
Carol shaved for St. Baldrick’s along with Jeremy and the whole family.
She and her family fell in love with St. Baldrick’s, Carol said.
“The numbers in my mind were staggering, and that’s just not right,” she said of childhood cancer statistics.
The family organized a shaving event in June that raised about $1,500 for childhood cancer research. They were planning on a bigger event when they got exciting news.
Just last week, Jeremy’s family learned that the little boy had an option that was different than the standard surgery and radiation — he was eligible for a clinical trial in Chicago.
Jeremy mugs for the camera with his head full of electrodes.
The trial, in which St. Baldrick’s researcher Dr. Rishi Lulla is involved, is studying whether a breast cancer drug used in adults could possibly be used to treat tumors like Jeremy’s in kids.
His family is hopeful that it could slow his tumor’s growth or even shrink it, when there are few other options.
Sometimes, Jeremy asks tough questions about his cancer and his future. Carol thinks about the possibilities too and her mind reels with the what-ifs.
“Once we learned that it was metastatic and it came back the second time, then the statistics were a little bit more shocking,” she said.
But the family just keeps going with the flow, laughing together, teasing each other and plugging along, no matter what is thrown at them.
“I have no intentions of giving up because some statistic says that — you know,” Carol said. “We don’t live that way. It’s one day at a time and that gets us through.”
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