REXBURG — Army helicopter pilot Derek Orr was stationed at Fort Wainwright in Alaska in 2015 when the unexpected happened.
His nose started to bleed frequently, and for long periods of time.
At first, he didn’t think it was a huge deal. Derek was used to flying UH-60 Black Hawks and had done a variety of things in the Army. He had served two tours in Iraq and one in Afghanistan, so a nose bleed or two wasn’t anything to worry about.
But these nose bleeds weren’t normal.
“He had to pack his nose,” Derek’s wife Sarah Orr says.
The nose bleeds would last at least an hour at a time. At first, his primary care doctors told him it could just be dry air. But he also developed sleep apnea, Sarah says.
“I timed him at night, and (he’d) go 25, even 30 seconds before a gasp,” Sarah says.
After the bloody noses, Sarah remembers clear fluid started leaking from his nose all day long. Sarah, a firefighter and critical care paramedic, was concerned about Derek’s symptoms.
“I knew it was cerebrospinal fluid,” Sarah says.
After these symptoms persisted for months, Derek was finally able to get in to see an ear, nose and throat specialist.
“He didn’t even put a scope in the left side (of my nose). He could see it,” Derek says.
“You could see the tumor … they didn’t know what it was,” Sarah says.
At the time, doctors weren’t aware that Derek, then 34 years old, had esthesioneuroblastoma, or olfactory neuroblastoma — a rare malignant cancer that starts in the olfactory nerves, or where the sense of smell originates.
“There’s only been 700 cases ever reported in the United States,” Derek says. “The doctors had only seen it in medical books.”
And from the couple’s research, only 1,000 cases have ever been reported around the world.
“There’s no set way to treat it,” Sarah says.
From his olfactory system, the tumor began to spread upward to the meninges, or the brain’s membrane.
The months of August to December 2015 were a whirlwind for Derek. It was also a precursor to Derek’s forced retirement from his dream job in the military.
During the 2015 holiday season, Derek and his family took a trip in Seattle, where he had been referred for doctors to do a biopsy. During that procedure, doctors opted to remove some of the tumor. They got the majority of the cancer out, and after Christmas, a followup surgery removed even more.
“They thought that they had gotten it all. They felt very good about it, and they felt with radiation that, that would go ahead and top it off and kill anything else that they may have missed,” Sarah says.
But, after three years of clean MRIs, the cancer in Derek’s brain came back. This August, scans showed nodules in the sack around his brain, and cancer on the frontal and temporal lobes.
Derek said he was first told nothing was wrong.
“We’re lucky that whoever took a second look at his MRI found it because they cleared him for a year,” Sarah says. “It would have been growing unnoticed.”
How long Derek has to live is unclear. Doctors believe it is the same olfactory cancer as before, but because of how rare it is, predicting what will happen is difficult. In comparison to other brain tumors, which act in similar ways, Sarah says they believe Derek has about a year left.
Derek is taking uncertainty as a positive thing, and trying to live out his life the best he can.
“We are planning for the worst but hoping for the best,” Sarah says.
Since finding out about his second diagnosis, friends and family have rallied around the Orrs even more.
Madison Fire Department Chief Corey Child, who works with Sarah, says the department has known about the Orr family since they moved back to Rexburg three years ago.
“We’re probably the closest family as far as work goes, and we’re happy to support the Orr family in all their efforts and challenges,” Child says. “The fire department will continue to help and support in any way that we can.”
Even a longtime high school friend of Derek has started a GoFundMe page for the family so they can finish a new addition to their home. The Orrs are grateful to all who’ve contributed to the fund.
“My main concern and his family’s main concern is being able to make sure that the family is set up with that big addition that he’s been working on to provide for his family should things not go as we all hope that they will,” David Thibault says.
Derek started building the addition with a little bit of help from family and friends. It still has ways before completion, but Derek gets too exhausted from doing the work on it. Sarah says, for now, their oldest makes due by sleeping on their couch.
“We do not have room for him. His room isn’t done yet. … I just feel awful for him,” Sarah says.
Right now, the couple continues to live life as normally as possible while waiting for word from doctors.
“I have headaches every day. I have chronic sinusitis all the time, I’ve got double vision, I can’t smell anything. I got muscles spasms in my neck just from the radiation to the muscles there,” Derek says.
Despite their struggles, the couple seems calm.
“Sometimes I feel maybe it’s a curse that I look fine on the outside,” Derek says. “It’s not quite that way.”
“I may be calm on the outside, but I’m not sleeping at night,” Sarah adds. “It feels different this time. It definitely feels different this time.”
Click here to see Derek Orr’s GoFundMe page.