PORTSMOUTH, N.H. – The Portsmouth, New Hampshire, community is making sure a little girl with an aggressive brain tumor gets to live her life to the fullest.
A few weeks ago, 9-year-old Ciara Brill began to have headaches, but her family thought it was nothing Motrin couldn’t fix. Then on Christmas, her family noticed she had a lazy eye. It was worse the next day.
“That was definitely alarming, we talked about it and (her mother) took her to the emergency room,” said Harold Brill, Ciara’s father.
Following a CAT scan and MRIs, Ciara was diagnosed with a malignant brain tumor called a diffuse intrinsic pontine glioma.
“The doctor was very blunt about it. Came out and said terminal upon diagnosis,” said Brill.
DIPG tumors are found in the brain stem and almost exclusively are found in children. The tumors are aggressive, difficult to treat, and affect the area of the brain that control breathing, blood pressure and heart rate. The tumors are rare: only about 300 children are diagnosed with them annually, according to Boston Children’s Hospital.
Somehow, Brill had to find a way to explain what was to come to his daughter.
To ease the pain, the Brills put together a bucket list for Ciara and a family friend started a GoFundMe account to “create as much joy as possible for Ciara.”
“I want to show her the world — as much as we can,” said Brill.
The bucket list gives the family something to look forward to. Brill said it helps him keep hope.
“(I) just have to for these guys,” he said. “(I) want to see her smile.”
The Brills are seeking a second opinion and hope to begin radiation six days a week for about a month to at least temporarily shrink the tumor.
The money from the GoFundMe account will also help the family, as the parents will be taking time off from work and there are rising medical bills.