Two families with daughters with same rare brain tumor diagnosis form bond even after they go 'Home from St. Jude'
Macey and Avery's parents supported each other through tough times in the hospital. Now they vacation, hang out and celebrate holidays together.
December 29, 2021 • 6 min
In a corner booth in the dining room at Tri Delta Place, a housing facility for families receiving treatment at St. Jude Children’s Research Hospital, Courtney and Rachel scooch over to make room for other parents whose kids also have been diagnosed with a rare brain tumor called craniopharyngioma.
“Cranio corner,” the women call it. It’s where they met for the first time in 2015 during their first visits to St. Jude.
Their daughters, just two years between them, hit it off, whispering about their worries and giggling together. Their husbands, one in the Army, the other in construction, both outdoorsy and Star Wars fans, did, too.
Courtney’s family lives in a small town in Washington. Rachel’s family had lived in Washington, too, not far from where her husband was stationed, though they were temporarily living in North Carolina. They’d move back the following year.
The moms inherently understood what the other was going through, even when words went unsaid because the kids were within earshot. They got up early for blood draws and scans, putting coffee in to-go cups to get the girls to their appointments on time. Together, they waited for news. Hoping it was good.
It had all the makings of a wonderful friendship. It turned out to be even more. Something they would take home with them.
'I knew this was the right place'
Courtney’s daughter, Macey, was 5 when her parents noted on the family’s growth chart fashioned like an oversized ruler that Macey was inches shorter than her two older sisters, Payton and Kendall, had been at her age. Her sister Sydney was just 2 and almost as tall as Macey.
Her doctor said it was nothing to worry about. But when Macey failed an eye exam and was referred for an MRI to examine her optic nerve in February 2014, doctors discovered a mass in her brain the size of two golf balls.
Surgeons removed the entire tumor, but it had swallowed her pituitary gland, stunting her growth, and choked off her optic nerve, causing blindness in her right eye.
Eighteen months later, two more tumors grew in the same spot.
Courtney posted about it on a Facebook group for parents of children with craniopharyngioma. Other parents told her about St. Jude, which treats more children with craniopharyngioma than any other hospital in the country.
Courtney and Macey traveled to St. Jude in September 2015. Surgery was risky because the tumors were close to her optic nerves and carotid arteries. Instead, Macey received six weeks of proton therapy, which aimed high-dose radiation at the tumors while sparing healthy cells. It rendered the tumors dormant.
“I knew this was the right place,” Courtney said.
'Happy to be part of the St. Jude family'
It was the place she met Rachel and her family.
Rachel’s daughter, Avery, was 4 when her parents worried she wasn’t growing like other children her age. “She was so tiny,” her dad, Isaac, said. All her friends were bigger.
Before starting a regimen of growth hormones, Avery’s doctor ordered a battery of tests.
An MRI revealed her tumor. It had wrapped itself around her pituitary gland and was pushing against her optic nerve.
In April 2015, surgeons in North Carolina removed the tumor, untangling it from her pituitary gland, though some damage had been done.
There was another worry. The reoccurrence rate for craniopharyngioma is high, even when the tumors are removed surgically.
From the same Facebook group, Rachel learned of a St. Jude clinical study for kids with craniopharyngiomas.
Rachel was scared when they arrived at St. Jude looking for treatment for her little girl. She found that — and something else. She found hope.
“We’re very happy to be part of the St. Jude family,” Isaac said. He didn’t expect to take that family with them when they went home.
'I'm not so different'
It started in that corner booth in the dining room at Tri Delta Place, which during visits became the families' regular gathering place. It's the only booth, the L-shaped table big enough to hold them. If someone else sat there, the kids whispered, "They're in our spot!"
They’re uniquely poised to understand what the others are going through. They speak the same language, much of it big medical words that other people can’t even pronounce. They know what it’s like to wait and worry.
“The worry, it’s always there,” Isaac said. Will it come back? If not this time, will it be next time?
If the news is good, they celebrate together, Isaac said. If not, they lean on one another.
“You are able to share all this knowledge with each other and come up with amazing solutions — or at least feel like you’re not so alone,” Courtney said.
For the children with the same diagnosis, there’s a realization, Courtney said, “I’m not so different. You’re like me.” For the adults, Courtney said, “It takes the anxiety and fear away from these trips because you are together.”
Since their families met, Courtney and Rachel have booked the girls’ appointments for the same time with St. Jude staff juggling schedules to make it work.
But it’s been more than just what happens at St. Jude, though it started there.
'We have a lot to be grateful for'
In 2016, Rachel's family moved back to Washington, just a two-hour drive from where Courtney's family lives.
That summer, Courtney invited Rachel to a weeklong summer camp for kids with cancer, where the two families shared a cabin. They got together for Thanksgiving that year and then every year after that, except for this year because Isaac was deployed to Qatar.
“We have a lot to be grateful for,” Isaac said. Especially knowing how differently things could have turned out.
The families vacation together and attend St. Jude events — the annual St. Jude Walk/Run, fundraisers and galas.
When they visit, at one house or the other, the parents double date, going out for dinner and leaving Courtney’s older girls to watch the younger ones.
They celebrate New Year’s Eve at Courtney and her husband, Jason's, house, eating Mexican food and shooting off fireworks. One year, they got snowed in.
It’s fun just being together, Isaac said. The girls sledding on the hill outside Courtney and Jason's house. Courtney and Rachel getting up early to shop on Black Friday. Isaac and Jason going to the opening showing of Star Wars: Episode IX - The Rise of Skywalker, getting their picture taken with Clone Troopers.
The parents text and call in between visits, sometimes asking for advice if something is going on with Avery or Macey. They compare medication amounts, which brands are better and discuss how to deal with side effects.
“It’s nice to have that sounding board. You need that,” Courtney said. “It helps get you through.”
'It's an incredible blessing'
It can feel magical when two families click like this. Not many can understand the bond.
“People don’t get it — and you don’t want them to get it because you don’t want them to go through that,” Courtney said. For both families, she said, “It’s an incredible blessing.”
All the girls get along. Courtney’s youngest, Sydney, is the same age as Avery. Avery’s little sister, Emma, who’s 8, adores Courtney’s oldest, 18-year-old Payton.
Macey is 13, about the same size as other girls her age now, an eighth-grader who plays the flute and loves arts and crafts, swimming, baking — her chocolate chip cookies are delicious — and camping.
Avery, 11, has caught up in size, too. The fifth-grader plays the violin and loves to paint and dance. She makes bracelets and sells them to raise money for St. Jude.
The girls take many of the same medications, morning, noon and night, including one that Avery chews while Macey swallows it whole. Because they face the same health issues stemming from craniopharyngioma, and share the worry that maybe the tumors will come back, the girls can talk to each other about those things.
“You never get to go one day without thinking about this stupid thing,” Courtney said. “You deal with this every day for the rest of your life.” But not alone.
At their most recent check-ups in December, when they gathered in the corner booth in the dining room at Tri Delta Place, the news was good for both families. Avery’s scans were clear. So were Macey’s.
The girls will be St. Jude patients for life as part of a long-term research study. And they’ll have each other, and their families, too, bigger now because of a connection made in a corner booth at St. Jude.