Nine-year-old Ciara Brill began having headaches a couple of weeks before Christmas, but nothing that couldn’t be treated with children’s Motrin.
After Christmas, Ciara had a CT scan at a local hospital, where doctors found what her father Harold Brill described as a rare and fast-moving brain tumor.
The diagnosis has left Ciara – a third-grader at Little Harbour School – battling the malignant tumor and her and her parents dealing with her uncertain future.
“You can’t prepare for this, there’s just no way,” Brill said Saturday. “Myself and her mother, the tears are just on and off all day. We know what we’re watching her go through.”
But Harold and Ciara’s mom, Stacie Brill, have been buoyed by support from the Portsmouth community.
A Gofundme page was started to “create as much joy as possible for Ciara for as long as time allows” and help with paying for medical bills and helping the family financially. The page has already raised more than $30,000.
“This community has rallied behind us. Complete strangers have donated and helped us. I can’t thank everyone enough,” Harold Brill said. “There’s no place in the world I’d rather live than Portsmouth.”
Ciara also received “a package with a bunch of get-well cards” from her classmates at Little Harbour School.
“She just lit up when she got that,” he said.
Brill said the Gofundme page is crucial because he’s shut down his business to take care of his daughter full-time.
“We need a lot of prayers, any financial support is going to be extremely helpful,” he said.
Right now, 9-year-old Ciara is “doing fantastic,” he said, but her parents and their extended family worry about the future, because they’ve been told the rare tumor, Diffuse intrinsic pontine glioma (DIPG) is “fast moving, rapidly growing and aggressive.”
Ciara is a “huge animal lover,” Brill said, who loves arts and crafts and is full of life and spirit.
A photo on a Facebook page dedicated to her at http://bit.ly/2i4yyS0, shows her riding a dirt bike.
“She’ll try anything, she jumped right on that dirt bike,” Brill said with a laugh. “When she saw my 10-year-old boy riding it, she wanted to try it.”
The family is supposed to get Ciara’s biopsy results on Monday, so they can “learn about what this tumor is actually made of,” Brill said.
“It’s not just one form, there’s several different make-ups of this tumor,” he said.
Once they learn that, they can start to decide what kind of treatments are available, he said.
He’s literally been calling “doctors or hospitals all across the world,” to try to find a new treatment or drug to attack the tumor.
“Right now, with Ciara it’s quality over quantity,” he said.
DIPG is so rare only about 200 to 400 children in the United States are diagnosed with it every year, Brill said.
He knows about the Seacoast pediatric cancer cluster that has been detected by state officials, but Brill does not believe anything his daughter was exposed to caused the tumor.
“Like the doctor said it’s just pure bad luck,” Brill said.
Like other parents of children with cancer, Brill believes much more of what the United States spends on cancer research should be spent on children’s cancers.
“Only about 4 percent of the money spent goes into children’s cancer research, which is kind of disgusting,” he said. “Definitely, we should be doing a lot more as a country to save our children.”
The Gofundme page, created by Brill’s sister, Georgette Labate, states the tumor is “found in a part of the brain stem called the pons.”
“The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance,” the page states.
Brill hopes to hear from anybody who could share important information about the tumor that might help his daughter.
“I definitely like hearing from families who’ve been through this, to share their experiences and learn what they know,” he said.
Ciara, who is home from school, loves to hear from her friends and classmates. Her school is working to keep Ciara in touch with her classmates through the “Monkey in My Chair Program,” where a stuffed monkey sits on Ciara’s chair and her classmates can write messages to her.
The monkey then visits Ciara at her home and she gets to write messages back, Brill said.
“We’re just waiting for the kit to arrive,” Brill said. “She loves stuffed animals, any kind of stuffed animals.”
In the meantime, he and family members continue to research what treatments might be available for his daughter after the terrible diagnosis.
“No parent can prepare for that kind of information,” he said. “I still can’t wrap my head around it.”