StemCell Therapy

Cancer is not just an adult problem.

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

An American Cancer Society report last year estimated2019 would seemore 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 becausethey're in school when not undergoing treatment or at checkups.

Third-grade student, Ciara Husing'sdiagnosis 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.'"

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

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

Its contents weretest 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 anguishnot justCiara'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.

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) getrarer 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 nextare most susceptible to brain cancer, then soft tissue cancers, including but not limited to sarcomas.

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

Ciara Husing, 10, plays basketball during a league practice at First Baptist Church Dec. 5. She was excited to be playing again after the fight for her life. Ciara was diagnosed with synovial sarcoma, a tissue cancer found in the body's extremities, in August 2018.(Photo: Ronald W. Erdrich/Reporter-News)

"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 asa 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.

MORE: Ward Elementary teacher in Abilene is a Life Changer, like it or not

In hindsight, itwasclue 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, everyhome remedy," Husing said. "Nothing worked."

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

Jack Marcelain, left, survived a benign brain tumor diagnosed in 2005, when Marcelain was 6 years old. He's now a social work student at Abilene Christian University, studying to one day help families who are enduring what he and his suffered through. His mother, Tammy Marcelain, right, supports him through his journey.(Photo: Ronald W. Erdrich/Reporter-News)

In 2005, 6-year-old Jack Marcelain was diagnosed with a type of benign brain cancer called pilocytic astrocytoma.

It was his last month of kindergarten, his mother said. Surgery at Children's Medical Center Dallas removed about 96 percent of the tumor. However,the 4 percent that remained, in Jack's brain stem, was acting as the heart of the tumor.

Tammy Marcelain, his mother, remembers it well. Jack? Not so much.

"I was so young at that point," he said, "I knew what cancer was, but I never really knew the whole gravity of the situation."

Though it's all burned into her synapses, what Tammy Marcelain remembers most is the immediate aftermath of the surgery. The danger of operating on the brain, especially the brain of a 6-year-old, became reality.

For four weeks, Jack was unable to use his eyes. He was unable to speak. He was unable to walk. His parents moved him into Our Children's House in Dallas while Jack was recovering.

You're mad, scared, petrified (in the moment). But you can't live like that. You have to know where he went and know where we're going. We have faith in our religion and our God.

At 9, after years of the tumor regenerating, Jack endured radiation treatment, aimed at addressing that tumor's heart in his brain stem. It resulted in two things: the right side of Jack's face is paralyzed and the tumor eventually was halted.

With that one caveat, mission accomplished.

"That was what eventually stopped the tumor from growing," Tammy Marcelain said. "Once he was cancer-free, he progressed like a pretty normal kid."

Jack Marcelain, now a social work student at Abilene Christian University, hopes to translate that experienceat least, what he remembers from being a young childhood cancer patient and survivorinto a career helping families in situations similar to were his family found itself all those 15 years ago.

He has singled out the pediatric hospital setting as his focus. He just wants to make sure future him can help in any way possible anyone avoid some of the struggles his family endured making sure he was receiving the proper care.

"Social work was never something I knew what it was," Marcelain said. "I knew you helped people. As I was coming into college, I had narrowed down my focus to between that and ministry. I knew I wanted to work with people and found this was a really good way to help people .... andmake that time a little less stressful."

In March 2018, Ciara was climbing on her bed with her siblings when she fell.

Thump! She landed on the bump. The noise she made was unlike anything Husing said she'd ever heard from her daughter.

It was questionable Ciara Husing, 10, would ever play sports again after she was diagnosed with synovial sarcoma. But she runs circles around people now, despite a large scar on her left leg.(Photo: Ronald W. Erdrich/Reporter-News)

Still, there was no change in the diagnosis. But the doctor prescribed crutches for Ciara.

"We know now that she had a tumor on her nerve and she hit the dang thing," Husing said.

In April, they finally were able to convince the hospital to order an MRI on Ciara's knee. It came back with an irregularity: a bursa, doctors said, had formed as a result of the Osgood-Schlatter disease.

The family argued with doctors, sick of hearing the same diagnosis. At this point, they were self-made experts and they knew their daughter had something, and it wasn'tOsgood-Schlatter.

"We argued, we yelled," Husing said. "Some bad words were said. But as we were scrolling through the images from the MRI, I saw a flash of something. When I pointed it out, it looked like a crescent moon, but when I pointed to it, the doctor said it could be the bursa."

A bursa is a fluid-filled sac that develops near joints due to friction.

Finally, there was a light at the end of a darktunnel, Husing said. While they had no idea what actually was happening, they knew there was a foreign body affecting her knee.

Again, Ciara's pain and struggle was justified.

'I knew something was wrong'

With the bursa identified, it was time to remove it. Surgery.

It happened in August. Husing said they were told it would take 20-30 minutes.

Hours ticked by.

Finally, the surgeon camethrough the doors. Husing said her stomach dropped.

"My heart stopped," she said. "I thought she'd died. I mean, that's what you see in movies when the doctor comes out."

When you hear those words, you don't know who to call. There is no speed dial for when you're told your kid has cancer. You pray about it but you don't know who to call.

Once she was able to move, they were ushered into Ciara's recovery room.

The surgeon sat between mom and dad and looked them in the eye. He told them they did a good thing getting her to surgery. He told them she needed him to cut into their daughter.

He told them he found a massof some kind.

"He said he'd never seen anything like it before," Husing said. "He said he got it out of her, cut it open and it was black inside."

That's where Husing's imagination took over. She kept thinking about the doctor's words. As she got home, she jumped on Google and searched out phrases like "pediatric knee mass."

The results weren't what she wanted.

"I thought it couldn't be cancer," she said. "But in my mind, I knew."

It's one of the worst feelings in the world, Husing said.

"When you hear those words, you don't know who to call," Husing said. "There is no speed dial for when you're told your kid has cancer. You pray about it but you don't know who to call."

Eventually, she called Ciara's pediatrician, one of the many doctors who, up to this point, classified it as Osgood-Schlatter disease. There was an apology, Husing said. And an offer to put her in touch with a child life specialist.

I was so young at that point, I knew what cancer was, but I never really knew the whole gravity of the situation.

Husing refused.

In her anger, she refused to allow anyone but herself deliver the information to her daughter and the rest of her family. Hours after opening the envelope, she sat with Ciara and began her explanation.

It didn't go well, Husing said.

"The cry she let out was awful," she said.

At that point, she hadn't slept much. Less sleep came in the next few days as she waited for test results on the mass to come back.

That's when she opened the envelope in her car. That's when reality confirmed both her worst-case scenario and her daughter's story.

Within 45 days of Ciara's diagnosis, the child had seen more of the United States than she ever thought possible.

Aside from the trips to Cook Children's in Fort Worth, they flew to Cincinnati in September 2018. There, she had a lymph node biopsy done to see if the cancer had spread. Nine days later, Ciara had traveled to the East Coast, inBoston for an official consultation.

She was going in for surgery.

There, she met with the man who helped change her young life around: Dr. Ernest "Chappie" Conrad III.

Specializing in both adult and pediatric sarcomas, Conrad was able to save Ciara's leg.

It's called limb salvage surgery, a procedure Conrad excels at and has pioneered.

Essentially, Conrad removed a section of herleg and replaced the missing piece witha donor bone.

Since that surgery, Husing and her daughter have been to Houston tomeet with Conrad, who serves as a professor of medicine in the University of Texas McGovern Medical School at MD Anderson Cancer Center.

Thomas Elementary School students released balloons in November 2012 to honor Rex Fleming, 10, who died earlier that week after a two-year bout with brain cancer. Students and football teams at Abilene Christian University, where his father was employed, and at Abilene High had rallied around Rex.

(Photo: Joy Lewis/Reporter-News)

When Jill Fleming sees pink pom-poms at football games, or National Football League players wearing pink cleats in October, she gets frustrated.

Here is the original post:
'I was scared': Abilene parents and children remember their pediatric cancer struggles - Abilene Reporter-News

This entry was posted on February 2, 2020 at 2:43 pm and is filed under Death by Stem Cells. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |