FOUNTAINTOWN — Life started to change for just about everyone back in March, but the amount of upheaval in one’s life is really all a matter of perspective.
In March, Scott and Kristyn Niederhaus were enjoying a dream vacation to Key Largo with their two young girls — 4-year-old Brynnley and 2-year-old Raegan.
They soaked up the sunshine. They swam with dolphins. They captured a week’s worth of amazing memories in photos and posted them to Facebook.
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Soon after returning to their Fountaintown home, their idyllic life was forever changed when blonde-haired, blue-eyed Brynnley was diagnosed with an inoperable brain tumor.
Since then, the community has rallied around the family, as Brynnley battles a rare form of childhood cancer with no known cure.
The majority of children diagnosed with DIPG — Diffuse Intrinsic Pontine Glioma — only live about nine months after diagnosis. Less than 2% live more than two years.
“It’s the rarest, fastest-growing kind of tumor in children,” Kristyn said. About 300 children are diagnosed in the United States each year.
For Brynnley, the diagnosis came in May, after her family started noticing changes in her shortly after returning from Key Largo.
Her left eye started to turn inward intermittently, which an optometrist attributed to vision problems. Brynnley was fitted with glasses in April, but her eye continued to turn inward more and more.
In late May, her symptoms suddenly escalated.
Her dad was rushing through a Greenfield parking lot with Brynnley in tow when he noticed she was dragging one foot. The family noticed she was starting to drool and slur her words. She also had intermittent headaches.
Her parents immediately took her to see an ophthalmologist at Riley Children’s Hospital, the week before Memorial Day, and the doctor ordered an outpatient MRI for May 29.
That’s the day their world would change forever.
The MRI revealed Brynnley had a mass in her brain, the kind that wraps itself around the brain stem, making it impossible to remove.
Due to COVID restrictions limiting families to just one parent in the room, Kristyn was alone with Brynnley when the doctor walked in and gave them the heartbreaking news.
“It’s one of those things, your world is turned upside down within a matter of a minute,” Kristyn said. “It’s something I would never wish upon my worst enemy.”
This Sunday, Oct. 18, Brynnley will celebrate her fifth birthday surrounded by family and friends at Strike Force Lanes in Greenfield. The owners at the bowling alley offered to host her birthday party, to celebrate a little girl who has been a source of strength and joy throughout a difficult battle.
The day will be bittersweet for her parents, knowing their daughter — who is known for a broad smile and infectious laugh — likely won’t get the chance to celebrate her sixth birthday.
Scott and Kristyn, who have been married seven years, have opted to pack a lot of living into this year, making the absolute most of the time they have left with Brynnley.
Kristen has taken leave from her job as an emergency room technician at Community Hospital North. Scott, who had just started a sales job when Brynnley was diagnosed, was terminated for missing a day during his initial 90-day work period. Both parents are now focused on spending as much time as they can with their daughters.
Their family’s favorite place is the beach, so they packed up and headed to Orange Beach, Alabama, for two weeks soon after the diagnosis. They also love camping, and were blessed with a camper from the Make-A-Wish Foundation, which grants wishes to kids diagnosed with cancer and other critical illnesses.
They’ve camped in South Haven, Michigan, and at the Yogi Bear campground in Bloomington. They’ve also visited Kristyn’s parents in Chicago.
“We’re trying our best every day just to make memories, just enjoying her being a kid and making sure she laughs and smiles every day,” Kristyn said.
“Our philosophy from day one is that we want to make the most of the time we have left. It’s hard, because you like to have hope and to think she’ll overcome it. The further we’ve gotten into this, the harder some of the days are. You sit and think, ‘It’s been four months. Are we that close yet?’”
Through it all, Brynnley’s parents have been honest with her about her prognosis.
“I told Scott we can’t lie to her; we have to be up front with her, so that’s what we’ve done from day one,” Kristyn said.
A child life specialist at Riley Children’s Hospital sat down with the family as her parents told Brynnley the news. It was as heartbreaking as any parent might imagine.
“Sitting there telling your 4-year-old child she’s going to go to heaven before you is not right,” Kristyn said.
She said Brynnley is a “mama’s girl,” and calls her daughter her littlest best friend. The doting mom now tags along when Brynnley attends Sonshine Kids Preschool Ministry in New Palestine to lend support.
“I always told her I’ll always be with her, that I’ll never leave her,” Kristyn said. But some days, the pain is almost too much to bear.
“She gets sad when she sees us cry, so I try not to cry around her. It’s very difficult seeing your 4-year-old struggle to run, struggle to function, but when she smiles and laughs you forget about it all,” she said.
“That’s the biggest thing that gets us through all the dark days, is seeing her laugh and smile.”
Scott’s longtime best friend, Paul Galbraith, said the spunky 4-year-old has always been known for her trademark belly laugh.
It’s been tough to watch such a great family struggle.
“Prior to this diagnosis, she was always on the run, always athletic, going and doing everything she could,” he recalled. “So unfortunately the treatment has slowed her down in some ways, except for her laughter and her joy. She’s got a great sense of humor.”
Just about every day, Kristyn will post on Facebook a video of Brynnley cracking up at something, encouraging people to find a reason to smile.
“I know Brynnley in just her short lifetime has impacted so many lives, probably more than most of us will impact in our lifetime,” said Galbraith, a life peace pastor at Brandywine Community Church in Greenfield.
He’s also Brynnley’s godfather, and got the chance to baptize both her and her dad earlier this year.
He and Scott became friends in college and have kids around the same age. It’s been amazing to see the way the community has rallied around the family,Galbraith said, especially in a year marked by so much conflict and chaos.
“Their family is experiencing the power of community in Hancock County,” he said.
Both Papa John’s and Mozzi’s Pizza in Greenfield have held fundraisers to raise money for the family, and friends organized a fundraiser at Arrowhead Golf Course in Greenfield. Loved ones also organized a Facebook fundraising page and Go Fund Me page.
People from all around the country have reached out to them because they’ve seen Brynnley’s story on Facebook.
Scott and Kristyn admit the support has been overwhelming.
“I can’t say enough for all the people who have supported us, from saying prayers to giving us whatever we may need, it’s just been unbelievable,” said Scott, 34. “It’s restored my faith in humanity.”
His wife agrees.
“We’re very humbled by the sheer love and support we get, sometimes from complete strangers. They pick us up on our sad days,” she said.
Through it all, the family marvels at the fact Brynnley continues to maintain her signature happy attitude.
“It would have been very understandable for someone in her situation not to want to do anything, but she’s always had a smile and wants other people to smile and laugh, even before everything that happened this year. That’s what helps us get through,” her mom said.
While they know the tumor growing in her brain will eventually take her life, Scott and Kristyn are doing their best to manage their daughter’s pain.
Since only a handful of hospitals treat DIPG, they make the three-hour drive to Nationwide Children’s Hospital in Columbus, Ohio, to see the doctor who first diagnosed Brynnley in Indianapolis.
Her doctor started her on a chemotherapy pill about a month ago, in hopes of slowing the tumor’s growth. Brynnley was scheduled to have another MRI scan on Friday, Oct. 16.
Brynnley’s little sister, Raegan, has been there loving her sister through it all.
“I think she kind of understands a little bit of what’s going on, because every night before bed she wants to tell Brynnley good night. One of the biggest things Brynnley has always enjoyed is being a big sister, so it’s hard watching them because Raegan wants to run around the house, and Brynnley can’t run and play tag with her anymore,” their mom said.
It’s been indescribably hard for her parents to see Brynnley change from an active, petite little girl to a preschooler swollen by the steroids meant to help ease her discomfort, who struggles to do the active things she once did.
“But seeing her smile and hearing her laugh always takes us back to remind us that this is the same Brynnley,” her mom said.
“Each and every day with Brynnley is a blessing,” Kristyn said. “We are beyond proud of her strength and determination to fight this fight. She is our hero.”
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To follow the Niederhaus family’s journey, visit the Brynnley’s Battle page on Facebook.
Donations also are being sought to help the family with expenses related to Brynnley’s care. To make a donation, visit the Bucks for Brynnley page at gofundme.com.
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