It’s overwhelming. We weren’t expecting it. … It’s just a whole new world to know people are there to support us. We’re just trying to pay it forward, like with the clothing drive on Christmas Eve. It's the true spirit of Christmas around here. —Keith Ward
LAYTON — Soft sobbing filled the hallway as Lota Ward hugged his parents before following a nurse down a hallway that led to a room where doctors planned to remove a tumor from the 8-year-old’s brain.
But those terrified tears didn’t belong to Lota or his parents. The stoic little boy glanced at the child who cried a few feet away as he wrapped his arms around Keith Ward’s neck. Lota’s eyes, just as quickly, shifted to his mother, who reached for his embrace.
“I love you, son,” Rowena Ward said, as her boy turned and started down that hallway.
“Be strong,” Keith added.
Maybe this scene would have played out differently if Keith Ward had never taken up running in 2010.
And if the father of six had never been moved to change his lifestyle after his mother suffered debilitating health problems, he wouldn’t have started running endurance races that impressed and inspired his children.
And if Lota and his two older sisters hadn’t convinced their parents, through dedicated training, that they were not only capable of running half marathons with their dad, but that they enjoyed them, the boy known as “the little warrior” would never have faced “the hill.”
That hill — a mountainous climb during an XTERRA trail half marathon — became the way Rowena convinced her son that he was capable of surviving brain surgery.
Lota Ward started complaining about headaches in September. Usually they only lasted for a few hours in the morning. But some days, his head hurt all day.
A trip to the dentist — for a root canal — seemed to solve the problem.
“The next day, he woke up and felt fine,” Rowena said. “So I thought, ‘It’s got to be the tooth.’ ”
There were other signs, but nothing that would alarm even the most attentive mother.
“He was sleeping a lot,” Rowena said. “But he was playing football, so I thought he must be tired. He never had a fever, nothing like that.”
Then he started complaining about being unable to see the chalkboard in school. There was a vision screening at school in a few days, and Rowena told Lota that if he failed that, they’d go to an eye doctor.
“They sent me a letter saying he didn’t pass,” she said. “I just had a feeling ‘Make an appointment for Lota right now.’ I called, and most places were a few days off, but I kept having this feeling, ‘Make an appointment NOW.’ I called a place, and someone had canceled.”
The appointment happened to be 45 minutes before Keith had to head to work, so he uncharacteristically decided to go to the appointment with his wife.
“The doctor said, ‘Both optic nerves are very swollen,’ ” Rowena recalled. “He said we needed to see a specialist right now.”
While his parents started to worry, Lota was angry that he wasn’t getting glasses.
“That just got worse by the time he got to the eye specialist,” Rowena said. “After the eye exam, the doctor asked his assistant to take Lota for a walk. When he said that, I knew something was up. (The doctor) said, ‘Normally when both optic nerves are swollen, then we should be very concerned. There is something pushing in his head, that’s pushing from the back.’ I said, ‘Are you thinking it’s a tumor?’ And he said, ‘Yes. Go to the emergency room right now and get an MRI.’ ”
The family went directly to a hospital in Ogden where Lota underwent his first MRI.
“They had to do it with him awake,” Rowena said. “It totally traumatized him.”
Doctors not only confirmed there was a tumor growing in the back of his head, but said the situation was critical.
“They told us, ‘You need to go to Primary Children’s tonight,’ ” Rowena said. “The pressure in his brain is really bad. The fluid is collecting and sitting in there, and it looks really bad. You need to go now.’ ”
The three of them endured a terrifying and surreal drive to Salt Lake City. Keith’s mind reeled, his heart was breaking.
“It was kind of a game changer for us,” he said. “It kind of tossed my world upside down. I didn’t know how to react. How could this happen to a kid who is able to run half marathons?”
Rowena had similar thoughts, but she quickly banished them as she felt the hand of God in that moment.
“Here is the crazy thing,” Rowena said. “I was so calm. I was at peace with everything. For some reason, I have always known Lota to be tough, especially after that first half marathon.”
It wasn’t just her son’s grit that reassured her. It was feeling that she’d had guidance from God throughout the ordeal.
“With everything that went on that day, I felt like Lota had guardian angels looking out for him,” Rowena said. “I felt like the only way for Lota to get that help was that it had to come through me. His guardian angels were guiding me. When the bad news came, they were there to comfort me and help me. It was just crazy.”
The situation was tougher on Keith.
An only child, her husband often wished for a brother to share life’s joys and sorrows. Rowena believes it was the bond they built through running that forged a link even more powerful than that of father and son.
“Lota has held onto this running thing with his dad,” she said. “There is just a different relationship that I see, the love, the bond they have. It’s something special they have.”
Lota was admitted to Primary Children’s that night, and doctors told his parents they’d operate on him in the morning, hoping to relieve the pressure in his head. As Lota and Keith talked, Rowena fell asleep.
“Lota asked his dad, ‘Do you think I’m going to die?’ ” she said. “And Keith was like, ‘Son, I think you are going to be OK.’ ”
His son had been given a new stuffed animal, which he handed to his dad.
“You can hold onto this, and that way you’ll never miss me,” he said. Keith was overwhelmed and woke his wife.
“You need to be awake right now,” Rowena said he told her. “I got up and went and sat with (Lota).”
As she tried to calm her son’s fears by answering his questions, she kept thinking of that first half marathon he’d run earlier this year.
“That was the one thing that kept coming into my mind,” she said. “I felt like I was being guided. I knew I just had to be open with him that night. I thought, ‘Go talk to Lota about running.’ ”
And so she did. She asked him if he remembered that hill that nearly caused him to quit his first 13.1-mile race. He said he did.
“Remember how you thought it was so tough?” she asked him. “Remember how it was so easy after that? This is like the hill. It will be easy after this. And that’s how we started talking to him more. The running really helped us help him with the hardest part of this.”
The healing power of receiving
Lota does his best to look mean as he stomps his feet and slaps his chest. His brother and some friends joined him in performing the Haka at an event aimed at helping the Wards deal with medical bills associated with the two brain surgeries he’s had since his diagnosis on Oct. 17.
Performing this warriors dance was his favorite part of the dinner and silent auction organized by the wife of his Little League football coach.
“It was fun,” Lota said. “It was nice for people to donate money for my medical bills.”
But accepting help isn’t as easy as it sounds.
“It’s hard for us to accept help,” Rowena said. “Many times, part of me, I just wanted to say no. I know that the most amazing feeling is knowing that people love you, that people really care. But knowing you’re taking their money, well, the people we know are not filthy rich. It’s hard. They’re willing to give the little they have. I felt undeserving of it all.”
But the family needed help.
In fact, the Wards needed the emotional support almost as much as they needed the financial assistance.
“They’re giving for Lota,” she said. “And I can’t say no.”
Ironically, it is, at least in part, the fact that the Wards are always helping others that moved some people to reach out to them.
“I think a lot of it is the family,” said Rachell Craig, whose two sons, Kingston Fuly, 11, and Malakai Craig, 10, were behind a fundraiser at Chick-fil-A earlier this month. “They are an amazing family. They inspire so many people just with the things they do. They are the kind of people who will give the shirt off their back for anybody.”
When the Craigs heard about Lota’s diagnosis, the boys, who play football in the same league as Lota, offered their own money first.
“They went and got their piggy banks, but I said, let’s brainstorm some other ways,” she said. “They know the Ward family has done so much for other people. ... It’s so close to Christmas, and they were concerned about them.”
The boys contemplated a few ideas, but then remembered the fast-food restaurant had hosted a fundraiser for their football team, and they decided that’s the route they’d go.
“I didn’t realize how much support we had,” Rachell Craig said. “The football fundraiser was big, but not as many as those who came that night for Lota.”
Lota organized his own fundraiser this fall, just before his last half marathon on Sept. 21. He raised about $2,000 for two young boys in his neighborhood who suffer from Spinal Muscular Atrophy (SMA). He even wore orange, a color representing their disease, when he won the XTERRA national championship for his age division in September. Now he has his own fundraising page to help his family with mounting medical bills. (www.giveforward.com/fundraiser/4jh6)
Still, Rowena admitted it is much easier to give than to receive.
“It’s so hard,” Rowena said. “After going through that, the overwhelming feeling of gratitude from inside me, it’s a very powerful feeling.”
The cycle of giving
Rowena said standing in that crowded Chick-fil-A earlier this month was a transformative experience.
“Strangers, total strangers saw it on Facebook and decided to come,” she said. “The feeling of appreciation, of feeling loved was so powerful, I came home and thought, ‘What can I do?’ ”
Something she’d seen a few days earlier popped into her mind. It was a post about how the Salt Lake Rescue Mission allowed homeless men to have showers three days a week.
“But they don’t have clean clothes to put on afterward,” Rowena said. “So I thought, ‘You know, that’s what I’m going to do.’ I feel so blessed as a family, let’s go do a men’s clothing drive.”
She put out the word, and friends responded with loads of clothing. The family planned to deliver it to the Salt Lake Mission on Christmas Eve.
“It’s been awesome,” she said of the clothing drive.
Her efforts to try to embrace that which is offered while looking for ways to share with others doesn’t mean there aren’t dark days.
“There are a lot of mixed emotions,” she said. “There are days when I felt really, really strong and brave and at peace. And then there were days when I thought, ‘What if I lose my boy?’ Seriously, there were days when people kept calling, texting, sending messages through Facebook, and I didn’t want to hear from anyone anymore. I wanted to go hide. I didn’t want anybody to talk to me. But that’s not my personality. I knew if I did that, I was setting myself up for depression.”
So she kept her heart open, even on the days when she feared she couldn’t handle what life offered. Her husband tries to do the same, although, for him, it’s been easier to find a way forward now that Lota can run with him again. The two have resumed their training, and the 8-year-old has even asked about running a 50-mile race Keith signed up for at Antelope Island in March.
He knows the power of a goal, so right now Keith's answer is maybe.
“Lota definitely has his up and down days,” Keith said. “Even his first run (after surgery), we just barely went up the street and around the block and he cried.”
Slowly, though, he’s returning to the boy he was before the surgeries, the second of which removed most of the benign tumor from his brain.
“I told him, this is something for you to enjoy,” Keith said of their runs. “If you want to be competitive, that will come later. Right now, I want you to just enjoy this.”
Lota doesn’t hear the maybe in his parents’ response to his request to run a 50-mile race. Running is one of the things that helps him most.
“It helped me feel not so scared all the time,” he said. “I just think about it. Running long races is hard. I want to get back to running. If I keep running, we’re going to start doing longer miles.”
Because doctors couldn’t remove all of the tumor, he’ll have another MRI in a few months to determine whether it’s still growing.
Every day until then will likely be a tangle of gratitude, fear, joy and pain.
“This has just been beautiful,” Rowena said of the support. “It made me really see the goodness that is out there in the world, and that it is in my community. It’s made me feel really grateful.”
Keith echoes his wife's sentiments.
“It’s overwhelming,” he said. “We weren’t expecting it. It’s just a whole new world to know people are there to support us. We’re just trying to pay it forward, like with the clothing drive on Christmas Eve. It's the true spirit of Christmas around here.”
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