Clementine’s Story: From Brain Surgery to Bike Balancing

Clementine

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Flipping up her sandy-blond ponytail, 8-year-old Clementine showed us the scar she had across her skull from brain surgery. “See, I bet you didn’t even notice it!” she said.

Rebecca, her mom, described Clementine (“Emmy” for short) as an absolute bowling ball who loved running around in pink tutus. “The kid had so much gumption and spirit,” she said. “She loved physical activity.”

But brain surgery, radiation, clinical trials and traveling between Pennsylvania and Minnesota left the usually sprite girl feeling nauseated, battling high fevers and extremely exhausted. “Before, she was a fearless cannonball of sunshine, style and attitude,” said Rebecca.
“After, she is at times a reluctant ray of sunshine who loves hanging out at home.”

It all started in late fall 2016, when Clementine had a splitting headache at school. Her grandpa brought her home, and by the time they reached the house, she had passed out and was unable to walk. Her family took her first to the pediatrician, then to the emergency room, and throughout the week, the crisis unfolded — and included an unprompted visit from the tooth fairy.

An initial CT scan revealed bleeding in Clementine’s brain, and doctors would have to perform surgery to remove what they presumed was a tumor.

Before Clementine was to have an MRI to further investigate the tumor site, the doctors asked whether she had any loose teeth. They were fairly certain she didn’t, but moments before she was sedated, one of her teeth popped out. “The tooth fairy came without being seen by any of the nurses, security, Mom or Dad. Who knew?” said Rebecca.

Clementine underwent the surgery, which was headed by a highly specialized team; the tumor was located in a tough spot in a part of the brain where spinal fluid is made and circulated and where motor functions are controlled. She also had an official diagnosis of glioblastoma multiforme. She’d begin her treatment plan with radiation and enroll in a phase II clinical trial in Pittsburgh to prevent more brain tumors from growing. The trial treatment, a vaccine, works like an immunization and is tailor-made for each patient. The lab uses Clementine’s blood to create a customized antigen vaccine that has to be administered within 45 minutes after being created. She then receives an immune booster in a separate injection.

Though a promising trial, the drug leaves Clementine with some detrimental side effects such as swollen welts on her legs, soreness and fevers.

Clementine has months of treatment ahead of her, but she’s still doing her favorite things. As Rebecca said, singing puts Clementine in her happy spot, and she loves drawing on scraps of paper and leaving them around the house. “If she’s mad at you, she’ll draw a picture of a broken heart and give it to you,” said Rebecca. “She is so creative.”

During Clementine’s treatment this spring, Rebecca found herself tearing up — not out of frustration or sadness from all that they’d been through but because she saw that Clementine had hopped on her bike and rode around the block. “She was balancing on a bike three months after surgery. With just a little wobble,” said Rebecca.

“[Clementine] is starting to show more spark and energy each day,” said Rebecca. “When you go through something so devastating, it helps you focus on what’s really important. We’ve been given so many gifts, and we don’t know how long we get to keep them, but man — we’re going to enjoy the hell out of them while we have them.”

The difference that you make.

Because of your support, new treatments such as brain tumor vaccines are being created for Clementine and other children battling cancer. Read more about how you’re improving brain tumor research.