JAY — Kathryn Waters wears her heart on her T-shirt.
The four-year-old loves hockey, but more specifically, she loves the Boston Bruins.
A GoFundMe page raising money for the little girl with an inoperable brain tumor shows a photograph of Kathryn wearing her Boston Bruins T-shirt.
Kathryn loved it when the Bruins recorded a video saying hi to their little fan in the Northeast Kingdom.
“She absolutely loves hockey,” says her “aunt,” family friend Heather Sargent of Derby.
The video is part of the wide outreach of love, financial support and prayers pouring out for the little girl they call “Princess” on a Facebook page called Kathryn’s Journey.
Sargent talked about Kathryn this week on behalf of Kathryn’s mom and dad, Dawn and Lenny Waters, who are trying so very hard to protect Kathryn.
They want her to be happy and without fear, and ask people not to ask them too many questions about what is going on, so they can shelter her as much as possible.
“We are taking one day at a time because that is what we feel is best for her,” Dawn Waters said in an online post. “I would love to reach out to every single person, but at this time it’s just not possible. Lenny, Kathryn and I love you all dearly and appreciate you all.”
Last summer the family noticed that Kathryn was having problems with her balance.
Sargent said she seemed more clumsy than other children her age and had a harder time walking up the stairs one leg at a time. She had difficulty balancing on one leg.
Their family doctor recommended a specialist at Dartmouth Hitchcock Medical Center in Lebanon, N.H.
An MRI was performed, and they got the news on Dec. 22, just days before Christmas: An inoperable tumor has grown around Kathryn’s brain stem.
“It’s not that it’s big, it’s where it’s located,” Sargent said. “Essentially they can’t operate on it without potentially risking Kathryn’s life.”
There is no treatment for this cancer called diffuse intrinsic pontine gliomas (DIPG). Sargent said Kathryn’s mom has told her that it is very rare and there is no known cure.
The Waters are working with doctors at DHMC and the Dana Farber Cancer Institute and Boston Children’s Cancer and Blood Disorders Center, where the details about this kind of cancer are on their website.
A biopsy was performed to determine if Kathryn will qualify for a clinical trial of a new treatment, Sargent said.
During the wait of three to four weeks for the biopsy results, Kathryn will receive radiation at DHMC to see if that will help.
The best-case scenario is that radiation and the clinical trial treatment will make a difference.
The worst-case scenario is that they can do nothing, Sargent said.
The family has health insurance but there are many costs that are not covered, she said.
And Dawn Waters had to take leave from her work to be with Kathryn at this time.
There are a lot of travel expenses because they have to stay overnight either in Boston or Lebanon for treatments, and other costs.
The community has rallied as the word spread over the holidays about Kathryn’s situation.
Kathryn’s aunt and uncle are involved in area fire and rescue departments, and their crews have really stepped up, Sargent said.
The GoFundMe page at gf.me/u/zdtfhk has raised $13,803 out of a $20,000 goal as of Tuesday. The Halo Foundation donated $500. The raffle of a donated snow blower at Newport Farm and Garden Agway raised $4,000.
Sargent said the family appreciates the outpouring of support and the effort to respect the family’s wishes.