HOLLAND, Mich — On a weekday afternoon, Emerson Hoogendoorn sits on the couch of her grandmother's home. In her busy hands is a green crocheting needle hard at work.
Emerson doesn't know what she's going to create with it yet, but she's doing quite well considering she only took up the hobby a few days ago.
School just started, and Emerson's mom and grandmother ask her how her transition from Waukazoo Elementary School to Harbor Lights Middle School is going.
For the moment, Emerson is living the life of a normal 11 year old.
But moments of normalcy haven't been as numerous and Emerson would like. When she was six years old, she was diagnosed with Diffuse Midline Glioma, a type of cancer that begins in the brain or spinal cord and usually gives patients only months to live.
"When we went to the doctor's office, the neurosurgeon was just kind of like, 'It's not good. Enjoy what time you guys have left,'" said Emerson's mom, Ami Hoogendoorn.
But Emerson and her family weren't willing to accept that fate.
"Emerson started radiation, and an oral chemo drug that is kind of like the standard protocol for that type of cancer," Ami said. "And while she was taking that, we were really reaching out to try to find clinical trials and different treatment options that would be available to her when she finished that. A family friend actually linked us to the ONC 201 trial, which is what she ended up getting on."
"Thankfully, it worked miracles. It shrunk her tumor and kept it small. It still is actually. That original tumor is still small and stable."
But this past May, Emerson received news of a setback.
"Every few weeks she has an MRI and bloodwork. We went for that regular appointment and they ended up finding that there were two masses - like the main one and then a smaller one near it growing," Ami said.
"Her tumor is actually caused by the radiation that she had five years ago. So it's a completely separate cancer now than what she started out with. So she's kind of battling number two, if you will."
Emerson recently wrapped up another round of radiation for this new tumor. She hopes to be receiving treatment that will work for her as well as the ONC 201 did.
"This kid is just awesome. I mean, she's an inspiration to everybody," said Emerson's grandmother, Barb Francis. "The stuff she goes through, she just goes and does. It doesn't mean that she likes it, but it's part of what we have to do."
Over the years, Emerson has received so much support from her West Ottawa school community. The middle school football team is wearing "Emerson The Brave" stickers on their helmet this year. Their coach is a cancer survivor himself.
"We met up with them after practice one day, and he introduced Emerson to the team. And he was like, 'This is who you are playing for. No matter how bad of a day you have, your day has not been as tough as Emerson's,'" Ami remembers.
"It was just very special to know that this new community that she's growing into has her back."
A group of West Ottawa K-5 teachers, affectionately known as "Emerson's Herd," have helped collect donations for the 6th Annual Emerson The Brave Fishbowl Auction.
This year, the auction will be on Saturday, September 16 at the old Park Township Airport, located at 1269 Ottawa Beach Road.
When the fundraising effort started, it raised money to help Emerson's family pay for medical expenses. But since then, they've been raising money for the Chad Tough Defeat DIPG Foundation, which helps fund research in the fight against pediatric cancers like DMG.
"It's empowering. It does make you feel good to know that you're helping these people, because when we started, there was nothing there. They didn't have the information that they do with that trial, like they do now. That was five years ago. Now there's other treatments they can also do too. She was the trailblazer with this thing," Barb said.
Emerson's family hopes as she begins this new cancer battle, she can continue to serve as a beacon of hope for other kids.
"I always prayed when Emerson was first diagnosed, and I still do every day, not only that there would be a cure for her, and that she would live a long and happy life, but I always hoped that she would be the kid who would help them find the cure - she'd be the one that would help other kids make it. And she has indeed been that," Ami said.
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