Clementine’s Story: From Brain Surgery to Bike Balancing

Clementine

Clementine

Flipping up her sandy-blonde 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 says. Just a few months after brain surgery, this energetic girl hopped on her bike and rode around the block—with just a little wobble.

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Before brain cancer, Clementine (“Emmy” for short) loved running around in pink tutus. “The kid had so much gumption and spirit,” says Rebecca, Clementine’s mom. “She loved physical activity.”

But surgery, radiation, clinical trials and traveling between Pennsylvania and Minnesota have left the usually spry girl feeling nauseated, battling high fevers and extremely exhausted. “Before, she was a fearless cannonball of sunshine, style and attitude,” says 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. Throughout the week, the crisis unfolded—and included an impromptu visit from the tooth fairy. An initial CT scan revealed bleeding in Clementine’s brain, and doctors had to perform surgery to remove what they presumed was a tumor.

But before Clementine was to have an MRI to further investigate the tumor site, the doctors asked her parents 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?” says 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. 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,” says 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,” says Rebecca.

“[Clementine] is starting to show more spark and energy each day,” says 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.”

Give back the spark of life to children like Clementine who are bravely fighting childhood cancer. To learn more, contact Amy Polski Larson at 952-224-8486 or apolskilarson@childrenscancer.org.