MACEY BODILY, 7, of Yacolt, shows how tall she’s grown since her 2014 brain surgery to remove a large, benign tumor growing on her pituitary gland. Macey’s parents describe her as their ‘sweet and easygoing’ daughter.
THE BODILY FAMILY poses for a family photo at their Yacolt home on Mon., Aug. 24. Macey Bodily, the second-youngest member of the family, is getting ready to take part in a medical trial at St. Jude’s Children’s Hospital in Jacksonville, Florida, to help cure her recurring brain tumor. Pictured clockwise from left are Payton, Courtney, Jason, Kendall, Macey and Sydney Bodily.
YACOLT – To an unknowing eye, the growth chart inside Courtney and Jason Bodily’s Yacolt home may look like any other, with pencil scratches marking the height and ages of the four Bodily children, displayed proudly in the center of the home’s first floor.
But underneath the normalcy, the growth chart tells another story – the story of what happens when a brain tumor takes root in a child’s brain, swallowing her pituitary gland, causing blindness in one eye and severely stunting her normal growth pattern.
“Do you see this mark here?” asks Courtney Bodily, pointing to a dash indicating her third-eldest daughter, Macey’s current height at 7 years old. “That’s where she is now. She’s catching up, but she’s still small for her age.”
Two years ago, Courtney noticed that Macey, then 5 years old, seemed very small for her age.
“She wasn’t growing like my other girls, so I asked the doctor … and he said, ‘Kids grow at different rates. You need to calm down, mom’,” Courtney remembers.
Looking back, and checking the growth chart, Courtney knows that her mother’s instinct was trying to tell her something important. Macey was 5, but her little sister Sydney, then only 2, was already as tall as she was. And when Courtney checked the growth chart, she could tell that Macey was several inches shorter than her older sisters, Dayton and Kendall, had been when they were 5 years old.
Still, trusting their pediatrician and wanting to believe that everything was normal, Courtney and Jason Bodily pushed their concerns about Macey’s height aside for a while. Then, in the winter of 2013, Macey’s grandmother noticed something.
“We had decided to homeschool and my mom was working with Macey when she noticed that something seemed to be wrong with her right eye,” Courtney says. “My mom has always been a bit of a hypochondriac, so I wasn’t too worried, but we took her in for an eye exam anyway.”
Diagnosis rocks family
Macey failed that eye exam and was referred first to an opthamologist and then to a specialist at the Casey Eye Institute in Portland. That was where doctors determined that Macey had something wrong with the optic nerve in her right eye.
“They told us that she had something called RAPD (relative afferent pupil defect) and that she wasn’t getting enough blood supply to the optic nerve,” Courtney says. “They scheduled her for an MRI three weeks later. I thought, ‘if we can wait three weeks, it must not be a big deal. But, of course, I went home and Googled RAPD and found everything from an optic nerve condition to a brain tumor. But we still thought, because of the three week wait, that it was no big deal.”
In mid-February, Courtney and Jason took Macey to Oregon Health Sciences University’s Doernbecher Children’s Hospital in Portland for her MRI. What was supposed to be an hourlong procedure lasted more than twice as long, and left the Bodily family in a state of worry.
“We came home from the scan around 5 and the doctor called at 5:30 to say that they’d found a mass in her brain,” Courtney says, shaking her head at the memory. “They wanted us to come in right away.”
The next few days were the stuff of every parent’s nightmares. Macey had been diagnosed with a rare, benign brain tumor known as a craniopharyngioma. The tumor had grown to the size of two golf balls and was resting on Macey’s pituitary gland, under her hypothalamus and dangerously close to two main arteries – in the heart of her brain’s hormone production center.
“These tumors are rare,” Jason Bodily says. “Not many doctors have seen them.”
Only about 350 new cases of craniopharyngiomas appear each year in the United States, and most of those cases occur in children between the ages of 5 and 14, or in older adults between the ages of 50 to 75. The tumors make up 1 to 3 percent of all brain tumor diagnosis.
Macey’s doctors at Doernbecher originally wanted to remove the tumor via nostril, but found that Macey’s tumor had grown too large. To get rid of the tumor, the doctors would have to perform brain surgery.
“Watching them take her into the ER was one of the hardest things we’ve ever had to do,” Courtney says.
“You have to give up all control,” Jason says. “And the question is, ‘Are we going to see her again?’”
Nine hours later, with family and friends gathered nearby, the Bodily family received great news: Macey was out of surgery, doing fine, and the doctor had removed the entire tumor.
“It came out in one piece, which we didn’t expect, so that was good news,” Courtney says. “But it swallowed her pituitary gland. They couldn’t even find it inside the tumor.”
Despite the initial good news, the days following Macey’s surgery were touch and go. The little girl suffered through infections that nearly killed her, and seemed to have turned into a completely different girl.
“She was despondent,” Courtney remembers. “We knew that might be the case for a couple days, but after four or five days, we were were concerned. She had always been so sweet and easygoing, and now she was like a different child.”
Eventually, Macey’s health and personality came back, but those few days after the surgery were extremely tough on the Bodily family, Jason says: “We never wanted to go through that again.”
A new normal and then another shock
In the weeks after Macey’s surgery, the Bodily family had to readjust to a new type of normal.
“Macey takes medicine four times a day,” Courtney says. “She has no pituitary gland, no adrenal function, so she will need to take this medicine for the rest of her life.”
Without a pituitary gland or hormones, Macey’s body wouldn’t be able to grow properly or go through puberty. The medications keep her alive.
Of course, after the initial adjustment, life went on. Courtney returned to her photography business. Jason went back to work. Older sisters Payton and Kendall returned to school and the youngest member of the Bodily family, Sydney, went to preschool. Macey, who loves to read – especially if she’s reading about princesses – learned how to cope with blindness in her right eye and with the daily medications.
The family played with their dog, Moose, and swam in the backyard pool. They went to church, interacted with their friends and neighbors. And they joined a group for families going through and recovering from the same type of tumor Macey had.
The craniopharyngioma group provides support for each other, Courtney says, and is there when members have questions about treatment options or the after-effects of surgery.
The group is where Courtney and Jason turned in early August when they once again received shocking news from Macey’s doctors. Two small spots in Macey’s brain had been growing. Doctors recommended another surgery, but the Bodily family couldn’t bare the thought of putting their child through brain surgery and recovery again, so soon after the last time.
“I went on the craniopharyngioma site and told them, ‘Macey has two cysts. The doctors want to wait and see for six months. What should we do?’ and that’s where I heard about St. Jude’s,” Courtney says.
According to several of the craniopharyngioma survivors Courtney talked to online, St. Jude’s Children’s Research Hospital was having great success with a trial using focused radiation to treat recurrences of craniopharyngioma.
Courtney and Jason didn’t hesitate. They secured Macey a spot in the trial and talked to the doctor who had seen great success using radiation therapy instead of surgery to destroy craniopharyngiomas and prevent them from recurring.
“When we talked to him, he said, ‘You can do the surgery, but 18 months later, this tumor will be back. That’s what this tumor does,’” Courtney says.
Within days, Courtney and Jason had made their decision. They wouldn’t put Macey through surgery again if they could treat her with radiation therapy and keep the tumor at bay for a few years. In the St. Jude’s clinical trial, the radiation therapy had shown a nearly 95 percent success rate of suppressing tumor growth for up to four years.
“It was either that or keep going back for surgery every 18 months,” Courtney says.
In early September, Courtney and Macey will fly to Memphis, TN, for the first stage of Macey’s clinical trial at St. Jude’s. There, Macey will undergo extensive medical testing and be fitted for a special mask that secures her head and keeps her still during radiation treatments. On Oct. 3, after what they hope will be a two week break back home in Yacolt, Courtney and Macey leave for Jacksonville, FL, for the six-week treatment.
This is the first time that the family has been apart from each other for so long, and everyone is having a tough time wrapping their heads around it.
“It will be really hard for Payton, because she’s very close to Macey and has never been away from her,” Courtney says, nodding to her eldest daughter.
At home, Jason will hold down the fort, working full-time and trying to help out with Courtney’s photography business on the weekends while taking care of three girls. At 12, Payton has agreed to help watch her younger sisters and make lunches in the morning, before school. And the family has reached out to their church community and friends to help care for their youngest daughter, Sydney, who is only 4 and has never been away from her mom.
“It’s going to be hard,” Courtney says. “But we’re trying to stay positive. We’ll be able to talk every day, and do Facetime. And Jason is going to come out for two of the weekends.”
Because Macey’s treatment will last Monday through Friday, Courtney hopes she can take her 7-year-old on short, fun trips in Florida on the weekends to get her away from the hospital and give her something to look forward to.
“She loves Disney World, so we might be able to go back there,” Courtney says. “But we have to see how she’s feeling after the radiation. Right now, we’re just taking this one step at a time.”
To help the family cope with the loss of Courtney’s income and pay for expenses related to the trips to Memphis and Jacksonville, Courtney’s sister has set up a fundraising site on Youcaring.com. To make a donation or get more information about Macey’s progress, visit www.youcaring.com/macey-bodily-409362.
