Abilene parents & children On pediatric cancer struggles

Partial reproduction, originally published Feb. 2, 2020 (Abilene Reporter News)

Cancer is not just an adult problem.

Whether it's a health fight in the public's eye or in private, children across the world claw, scratch and rip away in their battle with "The Big C."

An American Cancer Society report last year estimated 2019 would see more than 11,000 children between the ages of 1 and 14 diagnosed with some form of cancer. Of them, 1,190 would not survive.

Abilene is no safe haven. Those youngsters who are diagnosed must deal with more than just their fragile and failing health.

For them, cancer isn't just a disease. There's also a social element because they're in school when not undergoing treatment or at checkups.

Third-grade student, Ciara Husing's diagnosis was a death sentence. Not for her body, but for her standing in the social circles.

"They (fellow classmates) would be rude," said Ciara, now 10. "One girl told me 'You know you're going to die.'"

A mother’s journey

First, it was relief. Then reality set in for McKenzie Husing.

On a typically hot August afternoon in 2018, alone in her vehicle, Husing held an envelope in her hands. She began to cry.

Its contents were test results after a mass was removed from the knee of her daughter, Ciara.

Breathing in, she tore it. Two years of struggle, fighting, pain and anguish — not just Ciara's but also her own — channeled into that motion. She reached in.

It's contents read, "Synovial sarcoma."

Not cancer, she thought. 

Then reality hit hard. It most certainly is cancer, and Ciara, then 8, was in the fight for her life.

Synovial what?

Sarcomas are cancers of soft tissue, according to Dr. Douglas Harrison, center director of the pediatrics department at University of Texas MD Anderson Cancer Center in Houston.

Synovial, Harrison said, refers to the long bones that the cancerous soft tissue is attached to.

While synovial sarcoma is one of the most common forms of sarcomas in terms of diagnosis, it's not typical in children, Harrison said.

"A pediatric (cancer) diagnosis is a pretty rare phenomenon," Harrison said. "And (specific types) get rarer and rarer. It's extremely rare to be diagnosed with synovial sarcoma (in a pediatric case). So, it's not great that it's synovial sarcoma."

The most common diagnosis for children is acute lymphoblastic leukemia, he said. That's a cancer of the blood-forming tissue. Children next are most susceptible to brain cancer, then soft tissue cancers, including but not limited to sarcomas.

Get a clue

It was 2016. Ciara Husing, a kindergarten student, complained about a bump on her left knee. It hurt to the touch, McKenzie Husing recalled her daughter saying.

"I thought it was growing pains, at first," Husing said. To be safe, the family took Ciara to the hospital for an x-ray. It came back normal.

But Ciara's pain didn't go away. Neither did the bump. In fact, the bump got bigger. And bigger.

Eventually, after several doctor visits, the diagnosis came back. Ciara had developed a condition called Osgood-Schlatter Disease. Or so the family was told.

"This was her tag," Husing said. "As a mom, I thought, 'Finally we had a diagnosis.' I didn't second guess the doctors. And her pain was real."

According to the Mayo Clinic's website, Osgood-Schlatter manifests as a bony bump on the shin directly below the knee cap and associated most often with young athletes as they undergo growth spurts. It's typical among girls ages 10-13. Boys develop it at a slightly older age.

Ciara was 6.

In hindsight, it was clue No. 1 that something was terribly wrong with the determination. There would be others.

Ciara's "diagnosis" came in September 2016. By December, Ciara was in the waiting room of an orthopedic doctor. Combined with Husing's input, the doctor fitted Ciara with a knee brace.

But that was just a stop-gap measure.

By the time Ciara started first grade the next summer, she was leaving the brace at home while at school. It never really helped her much anyway, Husing said.

And the bump kept getting bigger. So Husing sent her daughter to school with knee pads on under her clothes. It led to some confidence problems as some teasing came along with the bulging joints.

Under normal circumstances, Osgood-Schlatter has specific symptoms. The bump, medical reports say, is not painful to the touch. And the inflammation tends to subside with enough rest.

Clue Nos. 2 and 3, Husing said.

Yet the Osgood-Schlatter disease diagnose continued.

Emergency room trips, visits to Cook Children's Hospital in Fort Worth and local doctor visits piled up, each doctor confirming what the previous one said despite the abnormal presentation. And each bill dropping the family deeper down a rabbit hole.

Ciara kept complaining about pain. Nothing was being done about it.

"I tried everything over-the-counter, every home remedy," Husing said. "Nothing worked."

So Ciara's father suggested they go to the doctor every time she complained about anything.