"They told us it was pretty serious, that it wasn’t a matter of years — it was a matter of months," Stacie Brill says of her daughter's diagnosis
Until just a few weeks ago, Ciara Brill was a typical 9-year-old living in Portsmouth, New Hampshire. She loves animals and arts and crafts, ran cross country at school and even spent some time as a Pop Warner cheerleader. “Life was unicorns and rainbows,” her dad Harold Brill tells PEOPLE.
“She just has the biggest heart and the bubbliest personality,” mom Stacie Brill, 34, adds.
That all changed just before Christmas when her parents say she started having headaches. Tylenol helped until Christmas morning when she also woke up with a lazy eye.
“We spent six hours in the ER and they did a CAT scan. They told us she was fine and to follow up with our pediatrician the next day,” Stacie recalls.
Ciara’s pediatrician took one look at the scan and knew there was something very wrong. She called the family and asked them to come in immediately.
“We had alarm bells going off. We thought maybe there was a pinched nerve…we knew it wasn’t good, but we certainly didn’t expect this,” Harold, 41, says.
The doctor sent them a few hours away to Dartmouth-Hitchcock hospital where a neurologist told them Ciara had a malignant brain tumor.
“They told us it was pretty serious, that it wasn’t a matter of years — it was a matter of months. It is indescribable how horrible it is,” Stacie says.
Harold adds, “She was terminal upon diagnosis. They said she had a tumor in her brain stem that went into the middle of her brain. That it was large and inoperable. It is every parent’s worst nightmare.”
They have chosen not to tell Ciara everything about her diagnosis, but she does know she’s very sick.
“She knows she has a brain tumor and she knows mom and dad are calling every doctor in the world to try to fix her. We’re very careful with our terminology with her and her 10-year-old brother. It’s just too much,” Harold says.
But they’ve also told her this is important family time and have asked her what she wants to do — people and places she wants to see — and the family is making a list.
First on that list? The Great Wolf Lodge water park. “I want to swim!” Ciara tells PEOPLE
She is also looking forward to a Disney Cruise and hopes to visit relatives across the country. The family has created a GoFundMe page to help them reach their goal.
“Anything she can think of, we’re going to try to make it happen. She keeps talking about sitting on a beach,” Stacie says.
The New Hampshire third grader explains, “Because it’s so cold here right now!”