I feel like I don't have a long ways to go because I've already gone far enough to achieve the accomplishments I want to earn. —Lota Ward
LAYTON — Lota Ward knows suffering.
The 10-year-old understands that he can’t just endure pain. If he wants to transform it, he has to embrace it. The Layton fourth-grader knows what many adults don’t because he’s had effective teachers in the sport he loves and the tumor he hates.
Lota was just 7 when he convinced his parents to let him run a 13-mile trail race. The mental frustration and physical pain of the half-marathon through Park City’s mountains only seemed to energize the child as his goals became grander, the distances longer.
Just when it seemed he was hitting his stride in a sport that gave him both purpose and joy, Lota was diagnosed with a brain tumor. It was a week before his 8th birthday, a month after he’d won an XTERRA National Trail Half Marathon Championship and five months before he was supposed to run his first 50-miler.
Between his diagnosis in October and the end of January, he had three brain surgeries, each time exhibiting such resilience and courage that he became an almost iconic figure in Utah’s trail running community.
Training alongside his father in February of 2015, it seemed the worst was behind him.
It was not.
A month before his 50-mile race on Antelope Island, doctors told him the tumor had returned and was growing aggressively. He would need a fourth brain surgery, this one scheduled two weeks after the race he was yearning to run.
Conventional wisdom might say the boy should give up such a grueling goal in favor of fighting the mass growing in his brain.
But Lota is anything but conventional.
And while the little boy with the bright eyes, slight speech impediment and generous heart had proved he could conquer massive, jaw-dropping challenges, he — and his family — would learn that some races simply don’t have a finish line.
Dr. John Kestle, neurosurgeon, tells Rowena and Keith Ward that he was not able to get all of the tumor out of their son Lota's brain, as Lota recovers from his fourth brain surgery at Primary Children's Hospital in Salt Lake City on Thursday, April 2, 2015. | Kristin Murphy, Deseret News
Purpose and passion
A lot of people have a love-hate relationship with running.
Lota is not one of them.
He started running because it was a way to spend time with his dad.
The fourth of Rowena and Keith Ward’s six children, Lota is their oldest son. He became his father’s shadow, even tagging along to work at his father’s previous jobs.
So it’s understandable that as Keith Ward was preparing for a 100-mile race, Lota began asking his dad if he could join him on some of the training runs. His passion for off-road races was born on the trails that scar the hillside behind their Layton home.
Lota Ward, 8, runs the 50-mile Buffalo Run with his father, Keith, on Antelope Island on Saturday, March 21, 2015. | Kristin Murphy, Deseret News
“I am super, super, super happy my dad is an ultrarunner,” Lota said. “Every time, after he comes home from work, I asked him, ‘Could we go for a run on the trail?’ I will never forget those moments. Some of those moments I will keep forever.”
When his mom signed up for her first half-marathon, which her husband agreed to run with her, Lota didn’t understand why he couldn’t sign up, too. He was persistent, and eventually his parents relented, signing him up for a trail run in Park City about a month later.
Rowena Ward expected tears at the finish line. Instead, Lota held the finisher’s medal up for his mom to admire and said, “I’m going to cover my wall with these.”
He ran two other races before being invited to the XTERRA U.S. Trail Half Marathon Championships, which he ran with two of his older sisters. Lota decided that he didn’t want to just run the XTERRA trail race at Snowbasin in September of 2015, he wanted to run for a reason.
Lota had two young friends afflicted with spinal muscular atrophy, and they were in need of new wheelchairs. He asked his mom if she would help him raise money in conjunction with the XTERRA race, and she agreed. They set up a fundraising page, wore orange to raise awareness about the disease and show support, and ended up presenting the family with a check for just over $2,000.
That experience established two things — his affinity and affection for trail running and his commitment to finding ways to be of service.
In the days before the XTERRA race, Ward said that while he was surprised his young children were so smitten with trail running, he hoped it would give them critical coping skills.
That hope would be realized more quickly, and in ways he couldn’t fathom.
And a few months later, when brain surgeries would steal so much from Lota, the boy wasn’t sure he wanted to go on living. It would be the promise of running, along with his ability to love and inspire, that would become his own lifeline.
'Bob the Bully'
The teratoma brain tumor may have been growing in Lota’s head, but the mass that first manifests itself in persistent headaches belongs to the entire Ward family.
Having a child with a life-threatening illness creates a dynamic unlike any other. Initially, the focus is almost exclusively on “beating” the tumor, which Lota dubbed “Bob the Bully” after learning another child’s strategy for making the fight less intimidating.
But in cases like Lota’s, where the fight and suffering is indefinite, it quickly becomes more complicated than finding a cure. Lota underwent three brain surgeries in four months after being diagnosed in October of 2014.
He came up with his mantra, “I got this!” which evolved into, “I got this! You got this! We got this!” He added "Beast Mode!" after hearing that former Seattle running back Marshawn Lynch may come out of retirement.
A running back himself, Lota even named the golden retriever given to him by the Make-A-Wish Foundation after Lynch, his favorite football player. Lota was a source of inspiration and joy as he and his father ran the Buffalo Run 50-miler in March of 2015. Lota made it 33 miles before his feet were too sore to continue.
Occupational therapist Kristen Gallup helps Lota Ward, 8, crawl after his fourth brain surgery for a teratoma tumor at Primary Children's Hospital in Salt Lake City on Friday, April 10, 2015. | Kristin Murphy, Deseret News
Two weeks later, Lota had his fourth brain surgery. This time the recovery was brutal. He had to learn to crawl and walk again. He had double vision and weakness on one side of his body. He couldn’t hide his sadness, his fear and his frustration.
Ultrarunners rallied around him, bringing him souvenirs, including vials of dirt, from their various runs and races. He kept track of other people’s adventures on a map that hung across his bed at Primary Children’s Hospital.
He loved the support the runners offered but admitted it also made him miss being able to join them. When asked what he missed most, he said softly, “The trees.”
Lota struggled physically, intellectually and emotionally in the wake of that fourth surgery. He struggled to do almost everything he easily did before his surgery. Worst of all, he was unable to play sports of any kind.
But he wasn’t the only one struggling.
Rowena Ward talks to her son, Lota, as he slowly wakes up after his fourth brain surgery for a teratoma tumor at Primary Children's Hospital in Salt Lake City on Thursday, April 2, 2015. | Kristin Murphy, Deseret News
Keith Ward, the chief engineer of the Grand America Hotel, was the sole source of financial support for the family. Rowena Ward split her time between Lota and the hospital and her other five children: Sina, 14, Nani, 13, Tai, 12, Sefa, 8, and Tifa, 6. They tried to juggle life’s requirements with the demands of a critically ill child.
Two years later, that is still the case.
“It changes from week to week,” Keith Ward said, rattling off the issues that have arisen with the other children. Some of them started to struggle with school, while others lashed out in anger because they felt neglected by their parents. Their youngest son kept running away from school last year, and when asked why, he said he was worried about his mom.
Behavioral problems became constant, and it caused significant stress on the Wards' 15-year marriage. The worst of those problems, however, was when Lota began expressing a desire to end his own life.
“It affects everything,” his father said. “It affects my thinking process at work, it affected my running. I put on 25 pounds, and I can’t even focus at the gym anymore.”
Twice, he said he found his son attempting to jump off their deck. His mother described angry outbursts that sometimes escalated to kicking or hitting. The family sought therapy, but in November of 2015, Lota had a meltdown that forced his parents to make one of the toughest decisions they’d been asked to make.
He and his youngest sister got into an argument, and as his mom was going down the stairs, he began punching her.
“He almost pushed me down the stairs,” she said. “Two days before, he said he wanted to die.” So she took him to the emergency room at Primary Children’s Hospital, and doctors determined he needed to be admitted to the Utah Neurological Institute. The problem was, there weren’t any beds available. So he stayed in a hospital room, which his father said seemed more like a vacation than a consequence for his behavior.
They were discussing whether to take him home when a bed became available. That’s when Lota really begged his parents to let him come home.
“It was definitely really hard for us,” Keith Ward said. “We weren’t getting along at that point. We had different views of this. I thought we could fix it on our own, and she knew we needed help from the hospital.”
Rowena Ward was terrified that her husband would agree to take Lota home.
“I thought, ‘He will totally think Daddy will bail him out any time,’” she said. “And here I am, I’m the one who brought him here.”
Keith Ward walked into the almost barren room at the Utah Neurological Institute and told his son he had to stay and deal with his emotional issues. It was gut-wrenching for both of them, but Rowena Ward said it was a turning point in their marriage.
“We were struggling so much,” she said. “Our marriage was really crumbling. I remember I looked at him, and I said, ‘Thank you.’ I felt like that was so hard for him to keep his boy there, but he made the decision for us.”
Keith Ward struggled with the reality that, for the first time in his life, he couldn’t fix something.
“That’s what I do for a living,” he said. “I fix stuff. But you can’t fix this. I think he got really upset and confrontational when he noticed I couldn’t fix him either. I wasn’t super dad.”
The Wards each wrestled with their own anger and guilt while trying to help their other five children sustain some semblance of normal life. Meanwhile, normal wasn’t an option for Lota. And while they understood their son’s sadness and frustration, they were blindsided by the anger.
“That was one struggle we had,” Rowena Ward said. “Nobody said to us, 'At some point your child will be angry. At some point, your child might get violent.' He is lost. Lota is grieving losses. We did not know that. It finally hit us, he is grieving his own losses. He knows when he’s outside playing with his friends that he is not the same anymore.”
Learning, living, inspiring
The reality is that life had changed for all of them. The boy they knew, the family they were, the tumor and surgeries stole it all.
“We were busy as a team trying to treat his brain tumor,” Rowena Ward said. “We were not really thinking ahead.”
And the tumor was far from finished.
Just as Lota emerged from the institute with new coping skills, he learned he’d have to undergo a fifth brain surgery. But this time, his parents talked doctors into treating the tumor with a laser ablation therapy pioneered by Dr. Joseph Petronio in Minnesota. The recovery was days instead of months, although Lota was forbidden from running for six weeks.
Lota Ward hugs his dad, Keith, before Keith leaves for a graveyard shift as his mom, Rowena, rests at home in Layton on Wednesday, May 4, 2016. | Kristin Murphy, Deseret News
This is the part of the race where runners question their ability, their fortitude, their sanity. The end is nowhere in sight and the pain seems unbearable.
Four months after that fifth surgery, Lota talked about his darkest moments, admitting that he was afraid he wouldn’t survive.
“I try not to think about it,” he said of his fear that either the tumor or the surgeries would kill him. “But when I was frustrated, I was thinking about it a lot. So I prayed to Heavenly Father that I should just die. But then I went to UNI. UNI taught me a lesson that I shouldn’t say that stuff. I didn’t get to see my mom or dad or my siblings for a while, so I felt sad.”
When he was able, he turned to running. When he wasn’t able, running came to him through generous acts of kindness from individual runners and groups. They ran for him, sent him notes and gifts, and reminded him that his fighting spirit inspired them to persevere through their own struggles.
Kim Hooper Paulding first met and learned Lota’s story when he participated in the Buffalo 50-miler in March of 2015. At first, it was just the idea that someone so young could run such a demanding distance.
“But as I watched videos and read stories, I was amazed at how kind and humble he is,” Paulding said. “He loves to serve others. When my own father was at the Huntsman Cancer Institute, a patient talked about ‘the gift of cancer.’ This gift helps you see the most important things in life. Lota definitely has that gift.”
Like many runners, Paulding follows the family’s trial and triumphs through the Facebook page: Lotatoa and the Ward Warriors.
“I am constantly amazed at how loving and kind and caring and positive her posts are,” Paulding said. “You can feel her pain and struggles at times, but when those days hit, she turns to her ‘community’ for love and support. It’s like Kickstarter or crowdsourcing but for emotional strength. That family has been through so much with surgeries and crazy emotions triggered by brain tumors and the expense and travel of all of this and through it all, they remain strong and solid and faithful.”
When they couldn’t participate, the family volunteered at races — something Lota said has been a comfort during those times when he couldn’t run himself.
“I’m super thankful that people are running for me,” he said last spring as he prepared for his sixth brain surgery. “I feel better that they make videos and send it to me, supporting me.”
Last year, he was honored by the Wasatch Mountain Wranglers for inspiring others with his attitude and perseverance.
Lota returned to running in January of 2016. But it was a race just a few months later that alerted his mother to new tumor growth.
In April last year, Lota ran the Salt Lake Marathon with Team Red, White and Blue. He was invited to be part of the team’s flag relay. His mother noticed that he was holding his arm behind him as he ran, and she knew the tumor was back and affecting his balance.
A ball with letters on it swings back and forth over Lota Ward as he tries to focus on the moving letters to improve his eyesight at home in Layton on Wednesday, May 4, 2016. | Kristin Murphy, Deseret News
“We knew it took about six months to see what the laser fully did,” she said. But even before their checkup, the Wards knew the tumor was growing again.
“I could see it on his face,” his father recalled. “He was getting a bit more clumsy, Rowena saw he was running funny, and I would look at him in the eyes and he was starting to get the red streaks in them again.” They also noticed that he’d been sleeping more and had struggled more with his vision therapy. They went to the hospital for their checkup earlier than planned and their fears were confirmed.
Faith and hope
Keith Ward admits to being the logical, cerebral one while acknowledging that his wife relies more on their LDS faith.
“I was raised in a very faith-oriented culture,” said Rowena Ward, who grew up in Samoa where her entire village prayed together each morning. “It’s who I am, and I’ve always found peace there. I know I’ve never knelt so much in prayer seeking answers to this.”
She’s instilled that in her children, as Lota said he relies on prayer to help him deal with situations he still can’t explain.
And when the tumor returned after that fifth surgery, she asked her husband to pray about what they should do next. Individually, they felt they should seek treatment directly from Dr. Petronio, and when doctors at Primary Children’s Hospital told them they felt the tumor should be treated with another craniotomy, they knew they had their answer.
The Wards traveled to Minnesota in July of 2016 for his sixth brain surgery. They returned, and the family opted for online home-school so they could have more flexibility in dealing with not only Lota’s illness, but also the issues that had arisen with the other children.
Rowena Ward said it’s been hard but healing to spend the school year this way.
“It really did help us connect and do more things as a family,” she said, adding that Lota can work at his own pace and rest when he’s tired. “We were able to take some trips in the middle of the school year because we could take school along with us. I was able to talk more about the situations with my other kids. I feel like they talk to me more. I feel we are closer.”
The Wards returned to Minnesota for Lota’s seventh brain surgery, another laser ablation, in December. Former Hunter High and University of Utah running back Matt Asiata and another friend helped get them tickets to a Minnesota Vikings game.
“I saw my first NFL game,” Lota proudly announced.
‘We live for now'
A smile spread across Lota’s face earlier this month as he contemplated what it meant to be running the Salt Lake Marathon with Team Red, White and Blue again.
“I feel amazing now,” he said 2 ½ years after that first diagnosis and on the eve of running his second Salt Lake Marathon relay. “I just want to get back out there and try my best.” He said he still has times when he is frustrated with what he can no longer do. He struggles with double vision, is less coordinated, and reading and writing are particularly difficult.
He was delighted when his old football coach recently asked him to be an “assistant coach.” And then, in one of his games, they designed a play specifically for him.
“That was a special moment to me,” he said. “I want to get back to football. Running is top dog, but football, I’m a football fan.”
He gushed about his first NFL game last December and expressed hope that Lynch will return to the field this fall.
Like his parents, Lota has learned to live in the moment. And last week was all about training with the flag as Team Red, White and Blue asked him to carry the flag for the first mile of the marathon.
Lota Ward, 8, gets new socks and shoes at mile 28 of the 50-mile Buffalo Run on Antelope Island on Saturday, March 21, 2015. Ward's full name is Lotatoa, which means "our warrior" in his mother's native Samoan language. Ward is also battling a teratoma brain tumor and is 1 1/2 weeks away from his fourth brain surgery. | Kristin Murphy, Deseret News
“I was just thinking to myself, carrying the flag means freedom,” he said. “I can’t let it touch the ground. I have to keep it upright. This means a lot to me.”
But maybe nothing is as meaningful as the simple reality that he can lace up his shoes and head outside for a run anytime he wants.
“I’m really, really, really, really, really, really, really, really, really happy to be running,” he said laughing. “I feel like I’m getting back to normal. I feel like I don’t have a long ways to go because I’ve already gone far enough to achieve the accomplishments I want to earn.”
His parents do the heavy emotional lifting.
Rowena and Keith Ward say the entire family has learned, suffered, grown and changed. They’ve developed new traditions, new hobbies (three of the children, including Lota, are acting) and discovered new talents (Tai is a gifted artist).
The tumor's impact on their lives hasn't ended. In fact, they acknowledge that it may never end. The future isn't something the Wards spend a lot of time contemplating.
They don't have the luxury. They don't have the energy. Every day brings new hills to climb, new challenges to wrestle.
Lota's cognitive issues mean he will require a special education teacher at school, and he is now seeing a speech therapist. The double vision, constant fatigue, frustration and anxiety are all reminders that Lota and his family are running a race that may never end.
"The double vision has interrupted his trail running a lot and put him in tears many times on the trails," his mother said, adding that he hopes to train his dog Lynch to help him navigate trails. "The fear of falling overcomes him when the trail narrows."
The fight for Lota's life, for their family, for joy has taught them what dedicated runners learn when fighting the limits in their own minds over those long miles — if there is beauty to be found, it will come amid struggle.
“On days where I look back and I say, ‘I really want my old Lota back,’” Rowena Ward said, “I say, 'I do want my old Lota back — my perfectly healthy, running chatterbox, very calm Lota back. But this is my Lota now. This is Lota, so how do I deal with the Lota I have now.'”
Lota Ward laughs with his mom before doing homework at home in Layton on Wednesday, May 4, 2016. | Kristin Murphy, Deseret News
Asked one year ago how he would thank all of the people who’ve run for him while he fights the tumor, Lota paused.
“That’s a tough one,” he said, and then indicated he would log miles in their honor. “I would like to say I will do this for all the people who’ve supported us.”
Jumping forward to last week, while discussing whether he'd ever have a life without “Bob the Bully,” Lota was hopeful.
“I’m just hoping for great news all the time," he said. "I am feeling way stronger. I’m just going to keep working on my muscles to run, get my strength up and just keep on going.”
Lota Ward trains for the upcoming Salt Lake City Marathon by doing squats while his mother, Rowena, helps his siblings, Sefa and Tifa, do homework at the Ogden Athletic Club in Ogden on Wednesday, April 12, 2017. Lota, who is the official race starter for the marathon, will be running it as a relay with Team Red, White and Blue. | Kristin Murphy, Deseret News