August 26, 2016 by
Photography by Bill Sitzmann

A small sigh of hopelessness escaped Ema Johanning’s lips as she looked up at the daunting steps of Bellevue West High School. Pain radiated down her left leg. It felt like someone had driven a screwdriver in the socket where it met her pelvic bone, twisting and twisting with each step.

Don’t worry about it, Ema’s doctors said. It’s just growing pains, an overemotional teenager trying to get attention, or just all in her head.

Ema could not escape the savage nightmarish monster that haunted her. Exhausted, dehydrated, and malnourished, Ema soon lost nearly 30 pounds. She threw up almost daily—all because of her agonizing leg.

Nikki Johanning, her mother and a former CNA, knew something was not right. Pills, fluids, and six visits to the ER did nothing to diminish the pain.

“Can you please admit my daughter. I can’t physically take care of her anymore,” Johanning tearfully begged doctors at yet another ER visit at Children’s Hospital. Ema could no longer walk and used a wheelchair just to get from the couch to the bathroom. In addition, Johanning had Ema’s three siblings to take care of at home, an exhausted husband who would sometimes have to stay up at night with Ema only to work the next day, and no family in the area to help out.

Ema-Johanning-1“I never took ‘no’ for an answer,” Johanning recalls. “If we sat back and waited, I don’t know if Ema would be here.”

Ema was admitted for pain control and underwent further tests.

Ema woke up groggy from medication. She heard her mother sobbing as she held Ema’s hand. It was one of the few times Ema had ever seen her cry.

“What’s wrong? Mom, tell me.”

Cancer. Ewing’s scarocoma. Malignant.

Ema felt like she had the wind knocked out of her. She barely heard her mother. The blinds were drawn tight. Even the smallest sliver of sunshine hurt, but there in the darkness of the room, Ema felt a hazy sense of relief rush through her.

“At least it’s not in my head,” she said as she hugged her mom. “We are going to beat this, and I’m going to be fine.”

Ewing’s sarcoma is a type of rare bone cancer that affects children or young adults like Ema and can be difficult to diagnose. It typically begins in the legs and hips, but can develop in other areas.

“It was my 16th birthday present,” Ema says now with a small, sad smile. Ema cancelled her sweet 16 birthday bash scheduled for later that week.

According to St. Jude’s Research Hospital, there is only a 56 percent survival rate for those aged 15 to 19. So while most of her friends were worried about homework, boys, or parties, Ema would have an IV attached to her arm full of chemotherapy.

It was an aggressive plan to attack the cancer hard and fast: three days of the “red devil” through a circular port in the hospital, and then two weeks at home depending on blood counts. If her counts rebounded, she would have another five days of treatment. This lasted a year from February until the end of May.

Ema would need a partial hip replacement and undergo physical therapy as well in June.

Johanning placed throw up buckets around the house. Her vomit was so hazardous that even a single splash burned her mother’s foot. Even Ema’s tough military father became squeamish.

But it really hit home when Ema lost her hair.

“The magic went away,” her mother says.

As Ema watched her locks of dark hair fall, so did her innocence. The reality seemed to weigh heavily on her teenage shoulders. She could no longer blend in with the crowd and lost her identity. All her future aspirations seemed to waver in the harsh light of her newly shaved head.

“The hardest part for me and her dad is you teach them to be the best people they can be, then watch that poison drip down into your child,” Johanning says. Her mother could not throw on a Band-Aid or kiss away the pain.

“I’d be lost without mom. She was my rock…my best friend,” Ema says.

In the oncology wing at Children’s Hospital, Ema gained strength from Nurse Anisa Hoie.

Ema-Johanning-2

“Don’t you feel like you belong here with a bunch of baldies all in one room?” Hoie asked her. Ema started laughing, the first time in her long cancerous journey.

She saw little kids playing games and suddenly realized she shouldn’t be feeling sorry for herself.

“Who am I to say my life isn’t worth fighting for,” Ema vents.

That teenage invulnerability though, that feeling of being untouchable by death, was gone.

“Cancer is like taking the most likable part of yourself and having to say good-bye to it because it’s killing you,” Ema says.

She attended her junior prom with just a smattering of brown hair with a flower tucked behind her ear, smiling in one picture with her two friends.

“I rocked that dress,” Ema says laughing. It was, of course, purple. Ema believes this is her “soul color,” universal for cancer survivors.

Now in remission, she finally feels free. The 20-year-old Ema shows off a tattoo on her shoulder: a heart with an owl and the cancer ribbon inside and “Forever Strong” etched on the outside. Her mother, grandmother, and other family members tatted up with “Believe” in support.

Her black hair has grown back—thicker and curlier than before. A puckered long scar travels up her left thigh. Ema was self-conscious of it at first, but now takes pride in the reminder. She is alive.

“A friend said to me, ‘The only one happier to see it than you and your mom is me,’” Ema says in a voice thick with tears.

Ema missed most of her sophomore and junior years of high school, yet she continued doing her coursework from home, despite short term memory issues and other side effects that still plague her. Ema graduated in May 2015. When she walked down the aisle Ema unzipped her graduate gown to proudly display the tank top underneath emblazoned proudly with “Suck it Cancer.”

“Everyone thought I flashed,” Ema says giggling at the memory. “My friends said, ‘you didn’t do what I think you did, did you?’”

College for Ema meant not only worrying about classes, but how to negotiate the small pharmacy (22 medications) she took with her to the University of Nebraska-Lincoln in the fall. 

“We didn’t know if she would live or die, and now she is going to college—it’s amazing,” Johanning says.

Ema is hoping to sky-dive with her father at the five-year mark. According to the American Cancer Society, the five-year survival rate is 70 percent for a tumor that has not spread, but only 15 to 30 percent if it has metastasized.

In the meantime, it is the little things in life Ema appreciates the most.

“I look at me still being here as a second chance at life,” Ema says. FamilyGuide