VANCOUVER, Wash. — Macey Bodily is a sweet, easygoing 7-year-old who loves to swim in the family pool and get manicures.
She likes to play with her three sisters — Payton, 12, Kendall, 9, and Sydney, 4 — and to visit her nana and papa. She met Cinderella and had lunch with the Disney princess in her castle.
She doesn’t cry when she gets poked with needles. She doesn’t complain about having lost the vision in her right eye. And she doesn’t fuss about needing yet another MRI.
She was brave when the surgeons at Doernbecher Children’s Hospital performed a craniotomy 18 months ago when she was just 5 years old.
And even now, facing a recurrence of the brain tumor that led to the brain surgery, Macey remains a bubbly, happy second-grader. Courtney and Jason Bodily are willing to do whatever it takes to keep their daughter that way, even if it means leaving their Yacolt home and flying across the country for a clinical trial at St. Jude Children’s Research Hospital.
“We’re going to do whatever we can to keep her with us as long as possible,” Jason said.
Life changed for the Bodily family in February 2014.
The previous fall, Courtney’s mom noticed Macey squinting while doing her schoolwork. Courtney shrugged off her mom’s concerns.
“I wear glasses,” she said. “It wasn’t a stretch that one of my girls would.”
Still, Courtney made an appointment with the doctor to have Macey’s eyes checked. She failed the eye test and was referred to an ophthalmologist and, later, a specialist at the Casey Eye Institute in Portland.
The specialist discovered that blood flow was restricted to Macey’s optic nerves and ordered an MRI. Three weeks later, Macey underwent a sedation MRI. The 45-minute procedure took two hours.
Thirty minutes after the family got home, they received a call from Macey’s doctor. Blood wasn’t reaching Macey’s optic nerve because a mass the size of two golf balls was growing below the 5-year-old’s brain.
“Our world kind of stopped at that moment,” Courtney said.
Two tumors measuring 4 centimeters were growing on Macey’s pituitary gland, behind her optic nerves. Macey was diagnosed with craniopharyngioma, benign brain tumors that are usually part solid and part fluid-filled.
Even though they’re benign, the tumors need treatment because they can grow and press on nearby parts of the brain or other areas, including the pituitary gland and optic nerves, according to the National Cancer Institute.
The tumors are rare. In the U.S., about 100 kids are diagnosed with craniopharyngioma each year. Worldwide, only two or three children per million are diagnosed, according to St. Jude.
Macey checked into Doernbecher Children’s Hospital in Portland the night she received the diagnosis. The next day, she faced countless labs and tests. And the following morning, Feb. 20, 2014, Macey underwent brain surgery.
“It was probably the hardest thing in my life, letting her go through those doors,” Courtney said. “You don’t know at that point if you’re getting your kid back.”
Nine hours later, the family learned Macey was out of surgery and recovering. Surgeons were able to remove the entire tumor.
Macey spent two weeks in the hospital after contracting an infection and experiencing other complications.
“They sent us home with this kid we had to figure out how to care for,” Courtney said.
Surgeons weren’t able to save Macey’s pituitary gland. Without the hormones it produces, Macey was left with no adrenal function — a life-threatening issue — and no thyroid function. Her body is also unable to manage salt and fluid properly, and her growth would stop — and puberty wouldn’t happen — without hormone therapy.
The tumors had already stunted Macey’s growth. She hadn’t grown since she was about 3 or 4 years old. Her younger sister had nearly caught her in height, while her older sister was 10 inches taller.
Searching for options
Macey takes a variety of medications to manage those side effects of the tumor. She also lost all vision in her right eye and wears glasses to try to prevent weakening vision in the left eye.
“We have to use chemicals to put her through puberty,” Jason said. “The most damaging part of this tumor is all of the after-effects.”
Macey’s MRIs came back clean for a year, paving the way for her to begin growth hormones in April. She’s grown nearly 3 inches since, making her the size of a kindergartner.
Last month, though, Courtney and Jason received devastating news after another MRI scan.
Macey had two growths the size of garbanzo beans recurring where the mass was removed 18 months ago. It’s unclear whether the growth is a tumor or a cyst, but it doesn’t matter. It has to be removed eventually. Because Macey is too young for radiation, that meant another brain surgery.
“She blind-sided me, quite frankly,” Courtney said. “I didn’t see this coming.”
Doctors wanted to wait another six months, then move forward with surgery. But Courtney and Jason didn’t want to put their 7-year-old through another brain surgery.
So Courtney turned to a Facebook group of craniopharyngioma survivors. A couple of moms in the group told Courtney to check out St. Jude Children’s Research Hospital, where a clinical trial was showing success at stopping craniopharyngioma regrowth.
Courtney took a chance and emailed Dr. Thomas Merchant, who is leading the study. He responded in 15 minutes.
With surgery as the only option, Merchant told Courtney, the tumors will continue to grow back every 18 months.
“All it takes is one cell left behind,” she said. “It’s so aggressive.”
The St. Jude trial began in 2011 and uses proton therapy to deliver targeted radiation directly to the site of the growth. Courtney and Jason decided the study was worth a try — it was an alternative to the surgery they desperately wanted to avoid.
“There’s got to be a better way,” Jason said. “That’s what St. Jude’s is trying to do, find a better way.”
On Aug. 18, Macey was formally accepted into the trial.
Challenging regimen
Courtney and Macey will soon leave for St. Jude’s in Memphis, Tennessee. There, Macey will undergo a head-to-toe health evaluation over two to three weeks. Around Oct. 5, the pair will head to the University of Florida Health Proton Therapy Institute in Jacksonville, Fla. There, Macey will be fitted for a mask that she will wear while undergoing radiation. The mask will bolt to a table, where Macey will lie for 30 to 60 minutes a day, Monday through Friday, for six weeks. She begins radiation Oct. 19.
Before Macey experiences too much fatigue from the radiation, Courtney hopes to enjoy some fun excursions to Disney World and Universal Studios, among other attractions. They also plan to volunteer at Give Kids the World, a nonprofit resort for kids with life-threatening illnesses.
Courtney and Macey hope to be home by mid-December. Jason and Sydney will visit Jacksonville for a couple of weekends — a family friend offered to pay for the flights.
A group from the family’s church has set up a schedule of volunteers who will watch Sydney and be at the house when the older girls get home from school. A meal calendar is filling up, making dinners easier for Jason after he gets home from work.
Courtney’s sister also started a YouCaring account to help make up for Courtney’s loss of income and to help cover other expenses; it’s raised nearly $8,000.
The support, Courtney and Jason said, has made getting through the latest setback more manageable.
“It’s much, much larger than us this time,” Courtney said. “It’s amazing to see people want to help. It’s incredible.”
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