LOCAL

Local kid’s fight against one-of-a-kind diagnosis proves 'a Scout is always brave'

What appeared to be a normal family weekend ended with the Daughertys' worst nightmare. Now, their son is fighting back from an extremely rare tumor with an even rarer cause.

Audrey J. Kirby
The Star Press
Christian Daugherty works on coordination while on a treadmill during a physical therapy session at Meridian Health Services Pediatric Rehab in Muncie.

ALBANY, Ind. — Staring down at the depths of Delta High School’s indoor pool, 6-year-old Christian Daugherty was anxious. That waving, crystal clear water was menacing to a child who had never broken through its surface from such a high distance.

Once he let go of the diving board's railing and reached that wobbling edge, he froze, prompting him to nervously backtrack to the ladder. But that moment of hesitation was brief, as he swung back around and bounded for the lifeguard’s arms below.

Christian proudly looked over to his dad, Brad Daugherty, as he climbed out of the water.

“Daddy, Daddy, do you know why I jumped?” Christian shouted.

Then, he uttered six words that would forever become cemented in Brad’s mind.

“Because a Scout is always brave.”

Like most kids his age, Christian was learning what activities he enjoyed. Those included his Wednesday night Cub Scout meetings, school and spending time with family. And this October weekend was full of quality time. After Saturday afternoon’s swim classes, the Daughertys gathered for an E.T. movie night, complete with Reese’s Pieces and Crystal Pepsi. Sunday they went to church, and Monday, Amanda Daugherty fixed a potato soup dinner for the family.

These were normal days for the Daughertys, the only difference being, as Amanda jokes, that she fixed a meal all four of her children scarfed down. And Christian, well, he was just a normal kid.

Subsequent events, however, would lead the family to unsettling news, something that would test Christian's bravery more than anything he had ever faced, but then usher doctors to an incredible finding.

It all started a few hours later that Monday evening.

The night that changed everything

Brad and Amanda heard Christian screaming around 10 p.m. This wasn’t the bellow that usually erupted when he argued with one of his siblings, or when he was playing. This was a shrill, piercing scream of agony. It alarmed Brad enough to blast open his bedroom door.

Christian was lying on the floor in front of him clinching his head. Prone to headaches himself, Brad thought his son was going through them, too. He carried Christian back to his room, hoping the darkness and his father at his bedside would soothe the pain enough to help him fall asleep.

Seconds later, it was Brad who was screaming. “Christian. Christian!”

Their son was unconscious.

Amanda was on the phone with emergency personnel before Brad could even return to their bedroom. She rode in the ambulance with Christian to IU Health Ball Memorial Hospital. Being a nurse there, she recognized her son’s symptoms as those following a seizure, but deadpan expressions from other nurses led her to think it could be much worse. And it was.

Brad Daugherty lies with his son, Christian, days before his second surgery, the first to remove the tumor in his brain.

There was bleeding in Christian’s brain. He was rushed to Riley Hospital for Children in Indianapolis, where he was admitted to emergency surgery.

The next 72 hours were brutal for the family waiting for answers, wondering how a boy who just had such a normal family weekend could be sitting in a hospital bed two days after, hooked up to tubes, his eyes purple and swollen.

“It was just a cryfest in that waiting room,” Amanda said. “We were just bawling, sobbing.”

Brad shared updates on his son's condition through daily Facebook posts. It wasn’t until the third day his followers would get the answer. Christian had a tumor the size of a baseball in his brain, one that had ruptured and would need multiple surgeries to remove.

“I wish I could post something more hopeful,” Brad wrote, “but tonight we were smacked in the face with a truth we wish we could hide from.”

Brad said the neurosurgeon told him the best-case scenario was removing the entire tumor, diagnosing it as benign and Christian not having consequential damage to his body. On Nov. 2, the family’s 10th day in the hospital, Christian had his second surgery, the first operation to target the tumor. Brad posted multiple updates.

Christian was losing blood.

Doctors needed two units.

Make that four units.

At day's end, the family wouldn't get the best-case scenario.

Elijah Daugherty leans on his brother Christian days before the scheduled surgery to remove his tumor.

The tumor was malignant, and it was growing rapidly. Christian’s brain was swelling. Doctors had to remove brain tissue just to get the tumor out.

Christian did make it through surgery, but the family was left with a much more doubtful perspective. They would spend 56 more days in that hospital – through Thanksgiving and Christmas –  Amanda usually sitting closely by Christian’s bedside blankly staring at numbers that blinked on the machines, and Brad pacing back and forth outside the room getting moral support from doctors and fellow families.

They decided it was time to let go and leave it in God’s hands.

“I just thought if he doesn’t make it, I’m going to tell myself regardless that he’s been spared from some pain, that he’s been spared from suffering,” Amanda said.

The days following were full of ups and downs, ups being the first time Christian spoke clearly and stood up straight post-surgery, but the downs being tense moments like when the Daughertys thought they might soon have to say goodbye to their youngest son.

How Christian's journey is one-of-a-kind

When doctors discussed Christian’s tumor, the word “rare” popped up in conversation a lot. After a while, it became sort of a dirty word the family wished to push aside. But rare doesn’t do this case justice. Not only is the tumor out of the ordinary, but the gene fusion that caused it to grow so rapidly had never been documented before, anywhere.

The tumor has a mouthful of a name – pleomorphic xanthroastrocytoma. Michael Ferguson, MD, an oncologist and co-medical director of the pediatric Precision Genomics program at Riley, said they see only two to three cases of that tumor a year, and he estimates annual diagnoses of it in maybe 100 kids across the United States.

Scans show before and after Christian Daugherty's tumor was removed.

When doctors saw how aggressively Christian’s tumor was growing, Riley’s Precision Genomics team stepped in to see its potential cause. Specialists pinpointed a one-of-a-kind phenomenon, specifically a CDC42SE2-BRAF fusion. Mark Marshall, Ph.D., microbiologist and co-director of precision medicine at Riley, said the BRAF gene is commonly mutated with cancer, and it has sometimes fused with other genes, but it had never been documented fusing with the CDC42SE2 gene. Christian’s fusion resulted in his rapid tumor growth.

“It’s like you’re driving a car, and someone is pushing the accelerator down and you can’t take your foot off or hit the brake,” Marshall said. “The gene fusion that Christian had is just like that.”

The finding led doctors to implement a possible treatment, one that would target the site of the tumor. They placed him on Trametinib, recently approved by the FDA to treat adults with melanoma. Nearly 50 percent of melanomas have mutations in the BRAF gene, and three percent have BRAF gene fusions.

“We do a lot of genomics tests on a lot of kids, and we don’t always find results for which there are treatments,” Marshall said. “And so whenever we find a result like this … we get pretty excited because there’s a good chance we could help this child feel better and live longer.”

Christian’s case will also bring light to possible treatments for other children with his rare tumor. Riley doctors are presenting their findings on his case to a conference.

“We need to let everyone know, in case there’s another rare one that pops up in Chicago, or California or New York, so they have an idea how to treat a gene fusion that’s really making the tumor grow,” Ferguson said.

Rare remained a dirty word for the Daughertys, but it helped them a little knowing Christian was making such a difference in the medical field and, quite frankly, that he was the only one documented with that fusion.

“In all honesty, it’s been great because we don’t have statistics,” Amanda said. “We don’t have odds. You don’t want to hear that your son has odds.”

Getting Christian back to 'normal'

Madyson, 14, said one of the hardest parts in coping with her brother’s condition was seeing that he “didn’t look like Christian.” His head was shaved, skin discolored, eyes and face sunken. For stretches after his second surgery, he couldn’t talk. He was weak. There was a point when he dealt with hallucinations.

“I was worried that we wouldn’t get our Christian back,” Madyson said.

But with every visit, he was more like himself. His third brain surgery mid-November went much more smoothly. On the 42nd day at the hospital, Dec. 4, he began to speak clearly. To provide a pep talk, Brad asked Christian, “You’re a Scout, right? And a Scout is…”

Lying in his hospital bed, Christian cut him off and recited that oath word-for-word:

“On my honor, I will do my best. To do my duty to God and my country and to obey the Scout Law, to help other people at all times, to keep myself physically strong, mentally awake and morally straight.”

Christian had learned that mere weeks before his first surgery, so this was monumental. Brad was so moved, he had him recite it again on video.

On Dec. 28, the family finally went home. (Brad posted this video on Facebook, too.) Christian’s grand exit began with a line of cheering doctors, which led him to the bell Riley Hospital patients ring when they complete treatment. The family celebrated a belated Christmas the next day.

“To be home as a family has had me grinning from ear-to-ear,” Brad posted.

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Months later, Amanda reflects on when she and Brad learned their son's tumor was malignant. She called Madyson that night and said, through tears, “I think we’re going to lose him. He didn’t do very well through the surgery, and they don’t think he’s going to make it.” Madyson abruptly responded, “Mom, he’s got this. He’s got this. God’s got this.”

“With such a positive attitude, it helped so much knowing that I didn’t have a little – well, she’s still my little girl – but I didn’t have this little girl at home that was a mess,” Amanda said. “No, she trusted God more at that moment, more so than I did, and it was beautiful.”

Sitting in their living room discussing everything, tears fogged Madyson’s glasses. Christian walked over, not speaking, and gently nestled his face in her neck as she wiped the drops gliding down her face. He held her hand and didn’t let go for minutes.

Amanda calls Christian a kid of extreme emotions. When he’s mad, he’s mad (though she says much of his meanness probably came from the tumor). But when he’s sweet, “he is that to the millionth degree.” It appears he still has that sweetness.

Christian Daugherty is hugged by his sister, Madyson, at the family's home in Albany.

Christian's next step is building the physical strength he lost after spending consecutive weeks confined to a hospital bed. Holly Zent at Meridian Health Pediatric Rehab said his legs would buckle during his first visit. Five to six weeks into rehabilitation, the now 7-year-old is much stronger and more eager. Zent said Feb. 21 marked the first time he ran on the treadmill, and he did so for two entire minutes.

“How fast are we gonna go?” Zent asked as she was ready to get the belt started.

“Mega fast!” Christian answered.

Like his favorite superhero, The Flash, he likes to be speedy.

The belt stopped spinning, and Zent told Christian to climb over an adjacent bench, about up to his waist. Using a light grip on the treadmill’s railing, legs slightly trembling out of tiredness, Christian hoisted himself onto the platform, then quickly jumped off. Then, he got back on and did it again. And again. Absolutely no hesitation.

A little bit of a change from Christian’s first leap off the diving board.

“He’s been flying through stuff, not only through his progress,” Zent chuckled. “but in general.”

Christian Daugherty works on coordination while on a treadmill during a physical therapy session at Meridian Health Services Pediatric Rehab in Muncie.

The Daughertys don't know what doctors will find after Christian’s MRI later this month, his first since leaving the hospital. And they don't know how fast the drug is working, or if it is at all. But based on his recovery, they’re a little reassured.

Christian was given the green light to return to school on Jan. 3, with the option to leave whenever he needed. He has only used that option twice for headaches (that Brad said are no worry to his oncologist as of now). Christian said he loves school too much to leave. He’s a first-grader reading at a fourth-grade level. Someday, he hopes to attend Purdue University and become a scientist.

'Onward Christian Soldier'

On a February afternoon, Brad was the guest speaker with the local Noon Optimist Club. Yes, after going through his worst experience as a father — OK, as a person — he told a group of positive thinkers that he is one of them, too. And he proved it. Not once did he break down and cry in hopelessness during his 30-minute presentation.

Sitting on the table are rubber bracelets. They’re swirled of Christian’s two favorite colors, green and orange. They read "Nov. 18, 2017." That was the day after Christian's third and final brain surgery.

The Daugherty family sport bracelets supporting Christian at their home in Albany.

One thing Brad asserted more than anything else in his speech was how thankful he is for the community, both online and in person. His social media following skyrocketed since first posting updates, which turned into “Onward Christian Soldier” posts after parting from Riley. He ends them with the hashtag, #Courage4Christian, and the phrase, “God is good all the time.” He has gathered well wishes from multiple countries. Thousands of likes. A YouCaring fundraising effort was started.

And socially, well, their community has been more than supportive. Albany Elementary School – where Christian, Grace and Elijah attend – and the family’s church (University Christian) reached out. Family of Tyler Aul, featured in a July Star Press article when he also underwent scary surgery to remove a tumor, paid a couple of visits to the hospital. A benefit auction raised money to assist with the Daughertys’ medical bills.

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Their lives aren’t as “normal” as they used to be. Brad and Amanda are on high alert whenever their children complain about headaches. Christian must take his costly pill at the same time every night, and he can’t eat after he has taken it. In support, the family doesn’t either.

And yes, they’re very scared to hear the results from his upcoming MRI. They don't know what to expect.

Until then, the Daughertys will soak in every moment they all have together as a family. And they relish in knowing Christian is still the same, normal kid he was before, despite his recent one-of-a-kind diagnosis. He still enjoys his schoolwork and his weekly Cub Scout meetings, now centered on pinewood derby season.

“That kid that was there is the same kid we have now,” Brad said. “We have Christian back.”

The sole visible remnant of the young boy’s surgery is the scar that runs over the right side of his head. Amid everything that might come his way, Christian will push forward.

He must, after all, because a Scout is always brave.

Audrey Kirby is a digital producer at the Star Press. Follow her on Twitter @ajanekirby, and email her story ideas: ajkirby@muncie.gannett.com.

The Daugherty family at their home in Albany.