When Cheryl Rounds gazed at her newborn daughter, all she saw was a beautiful healthy baby.
But sometimes when she listened to little Annika cry, she knew something was wrong.
“She had this painful cry, and she did it twice,” said Rounds. “But it wasn’t like a normal kid cry. It was like, ‘I’m in so much pain.’ It was more a scream than a cry.” It took four doctors, but when Annika was 10 weeks old, she was diagnosed with neuroblastoma.
“She had stage 4 (cancer) at 10 weeks old,” said Rounds. “It was along her spine, in 80 percent of her liver, and it was also in her bone marrow. And she was like this perfect little baby.”
Disbelief gave way to sadness, fear and anger as Rounds watched her baby fight for her life. But she quickly discovered that the parents of children with cancer don’t have time to be swept away by self-pity. They may feel moments of helplessness and fear, but they also have children to comfort, families to care for, jobs to maintain, houses to clean and bills to pay.
While their children fight for their lives, they battle for normalcy.
“It absolutely changed us,” said Mandalina Groves, whose son Gabriel was diagnosed with a cancerous brain tumor at age 3. “I remember throwing up after finding out. I was three months pregnant, and I threw up on my neighbor’s lawn. I remember thinking, ‘I just want my life back.’ But I also wouldn’t change it because of what I’ve learned. But it is hard.”
The tears glisten in her eyes as she talks about how she’s become adept at savoring each moment, even those annoyances that most parents dread.
"I just enjoy my life every day, and I don’t worry too much about the future,” she said. "I enjoy him for the things he offers. I enjoy things that other people might find irritating.”
Parents who watch their children endure cancer treatments feel much more than sadness or pity. They are also inspired by the strength, determination and joyful spirit the young patients exhibit throughout years of painful, debilitating treatment.
One group, most of whom connected with each other through a Facebook support group for mothers, is so inspired, its members plan to run 200 miles to honor their children and make the world aware of their fight against childhood cancers.
The group formed a team for the Ragnar Relay’s Wasatch Back, which begins next Thursday and traverses nearly 200 miles along the back of Utah’s Wasatch Mountains. A dozen mothers, three dads and one aunt make up the "If my kid can fight cancer, I can run Ragnar!” team, and their plan is to raise awareness while honoring their children.
“I don’t think a lot of people know about childhood cancer,” said Rounds, who taught her 15-month-old Annika sign language so she can communicate with her about her needs. “I didn’t. I think I knew Primary Children’s (Medical Center) had an oncology unit, but you just don’t want to think about it. And so, I guess that’s my thing. I want people to know it exists, and I want more funding for childhood cancer. Finding cures requires funding.”
About half of the parents were not runners before they began training for the Wasatch Back.
“I wouldn’t do it,” said Rounds laughing. “Running is so hard! I do think about my daughter when I run. I want to tell her one day that her mom ran for her, which will probably never happen again.”
She said she’s intimidated by the challenge.
“I’m scared,” she said. “It really has gotten me through thinking about my daughter as I run. I can really push myself to run because I just think about all she’s been through and the pain she’s endured, and I think running is nothing compared to all of the pain she’s gone through.”
Megan Gibson’s 3 1/2-year-old son has been fighting leukemia for more than a year. “This training, for a lot of us, is very therapeutic,” said Gibson, who is helping Christine Aguilar captain the team. “There is a lot of anger and sorrow in our little world, so it’s been really good.”
She said finding time to train has been difficult, so some parents are splitting the legs normally assigned to one runner.
“Our kids do hard things every single day,” said Gibson. “So we can do this one hard thing in honor of them.”
Some, like Groves, will run all three legs on their own.
“I thought it was an awesome thing for all the parents to do,” she said, lowering her voice and fighting tears. “As I watch Gabe every day, he’s on so many medicines, multiple times a day. He’s in the hospital all the time. I watched everything he does and I can run for that. I can do something hard for him and all of the other kids.”
She hopes other parents see their effort and regardless of their struggle see the beauty in how they’re dealing with an impossible situation.
“I don’t know about everybody else, but for me, I want people to know that people can survive and thrive, even though it may be hard. There can be some great things along the way.” One of those unexpected blessings is finding each other.
Jodi Mortensen’s son Carson was diagnosed with leukemia when he was 2.
“There was no support for families whose kids have cancer,” she said. “It’s pretty tough to hear. Nobody wants to go through something like that alone. For me it was, well, I wanted to talk to other moms and families about it.”
Federal privacy laws prevent hospitals from sharing information about other patients, so she was left to find other parents using her skills of deductive reasoning — sad, tired and quite often in the company of a balding youngster. She started a Facebook page and very quickly, parents reached out for help or to offer support to others.
Tony and Christine Aguilar will run for their son Ronin, who is 4.
“He just had a limp to where we thought maybe he had sprained his ankle,” Christine said. “We took him in and he was diagnosed very quickly.” The emergency room visit turned into 10 days in the hospital.
“Complete shock,” said Christine of how she felt in the days after Ronin’s diagnosis. “It’s not like we’d been struggling for months trying to figure out what was wrong with him. I felt blindsided because we thought maybe he twisted his ankle, something simple.”
Tony Aguilar said it was tough, but he felt he had to be strong for his wife and other children. He said his wife convinced him to participate after catching him “on a good day.”
“We want more pediatric cancer awareness,” he said. “These kids are tough. I work with a couple of other cancer organizations, and I know everybody goes through it, but these kids are amazing. They go through tough stuff every day. Yes, they cry — they kick and scream — but so do adults. I would love to take it away for them.”
Christine adds, “I think a lot of people think it’s rare. And it’s far from rare. It was something I didn’t really think about until it touched my life.”
Mary Driggs was an occasional runner when her daughter, Claire, was diagnosed with acute lymphasitic leukemia at age 15. A year later, she is finally able to return to high school at Olympus and feel like a normal teenager.
“I was freaking out quite a bit,” said Claire, 16. “I do appreciate (the parents running for her). If anyone shows support for childhood cancer, I appreciate it because it’s not always as recognized as other cancers.”
Driggs said it enables her to do more than watch helplessly as her daughter struggles to do the simplest tasks.
“A 5K is the most I’ve ever done,” Driggs said. “Then I saw one of my (assigned) legs is 6 1/2 miles. But I thought, ‘You know, I spent a lot of months watching my daughter not be able to go from sitting to standing, and I would run and think I’m doing it because she can’t run. And that’s when I really started running was after she was diagnosed.” The daily exercise helped her deal with the sea of issues that arise when a child is dealing with a life-threatening medical condition.
“You can kind of put your problems down on the side of the road next to you and run away from them,” she said smiling, “but it’s not hurting anyone.”
All of the parents find their own way to deal with helping their children navigate cancer, and in the process they find beautiful moments in what others might see as mundane.
“It makes us think about what matters in life,” said Shawn Beus, whose 12-year-old daughter, Brielle, was diagnosed with leukemia nearly three years ago. After two failed bone marrow transplants, doctors told the family that she had just a few months to live. The family's situation is complicated because two months after Brielle was diagnosed in 2010, Shawn Beus was diagnosed with an incurable blood cancer. He said he will run for Brielle because he wants her to know he is fighting for her; he supports her; and he admires her strength and courage.
The family is trying to focus on enjoying whatever time they have together.
“We try not to sweat the small stuff. Things seem petty in life, but we still have to take care of ourselves, still have to have jobs, and the lawn still has to get mowed,” he said. “We still have to do those things that we don’t care about anymore because we just want to be together as a family.”
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