More than anything else, Kinsey Siadek’s family wants the world to know what a warrior she was.
“She fought very hard and very gracefully and with dignity,” said her mother, Amanda Siadek, 40. “Everybody will remember that, and her smile.
“She knew that, no matter what, there were still reasons to smile.”
Kinsey died April 9 at home, following a 15-month battle with osteosarcoma during which she underwent chemotherapy, weeks of hospitalization and several surgeries, including amputation of her right leg.
“She dealt with so much more than people knew,” Amanda said. “They really don’t know how strong and how much of a fighter she was.”
Kinsey was just 1 year old and her sister, Kabrina, was 4 when their dad, Adam, joined forces with Amanda and her two daughters – 5-year-old Ashlee and infant Kay.
The four girls grew up noisy, busy and happy.
Amanda said Kinsey was the most active but also the quietest of the four.
“She was very observant,” Amanda said. “She had this little bitty body and these great, huge brown eyes. She’d look around at everything, taking it all in, and not say anything.”
She was also the sister most likely to rein in the others when they were headed for trouble.
“She was the voice of reason,” Amanda said with a laugh. “She’d try to talk them down from whatever they were doing.”
Her sunny disposition carried into her teen years. Kinsey played soccer at Seckman High School and worked an after-school shift as a bagger at a local grocery store.
Everything changed for the Siadeks, though, in the fall of 2015, when Kinsey began complaining of pain and swelling in her right knee.
“She had been pushing carts at Schnucks; we thought maybe she had tweaked it somehow,” Amanda said.
In January 2016, the day after her 17th birthday, an MRI revealed that Kinsey had a cancerous tumor in her right leg
“It was a complete shock,” Amanda said. “She cried all the way home.”
But it was what she did next that set the tone for the next year and a half.
“She let me tell her dad, and they cried together for a little bit, and then they were done,” Amanda said. “She said, ‘I’m going to fight this. I’m going to do what I need to do to beat it.’ It was important for her to hit it head on. She knew the mental part would be difficult.”
In February, Kinsey started chemotherapy, but by April it was clear the medicine wasn’t working.
“She was sick all the time,” Amanda said. “They did more tests, and found that the tumor actually was growing.”
The next step was surgery. In May, surgeons removed part of Kinsey’s femur and her knee, replacing them with a metal prosthesis.
“That’s when she got a blood clot. It started in her foot,” Amanda said. “She couldn’t do rehab because of pain. It just spread up her entire leg, and it started moving the cancer along with it. The tumors and blood clots were helping each other.”
Kinsey battled through the summer with pain and with kidney problems stemming from the toxicity of a second round of chemotherapy.
She began to feel a little better, and started back to school for her senior year determined to live her life to the fullest.
She was amazed to be named to the Homecoming court, and overjoyed when she was named queen, just a few days after her parents received the grim news that her cancer had spread to her lungs.
“We fought with ourselves about whether to tell her,” Amanda said. “She had so many plans for the weekend! She still felt OK and we wanted her to have some fun.”
Normally shy, Kinsey looked forward eagerly to the festivities.
“She always hated to be the center of attention,” Amanda said. “But when I asked her, she said, ‘Mom, this time I’m just going to go out there and take it all in.’
“It was funny, in a way. Before, she was just an ordinary girl who blended into the crowd. But then, then after she got cancer, everybody knew her.”
Students, staff and administration at Seckman, as well as the wider community, were supportive of Kinsey and the whole family as they faced ever-tougher circumstances in the fall. An experimental drug protocol didn’t shrink the tumors, and Kinsey made the heartbreaking decision to allow her leg to be amputated.
In November, doctors told the Siadeks there was nothing more medicine could offer them.
“Kinsey was a unique case,” Amanda said. “The tumors that were so aggressive; the chemo her body rejected; the blood clots; the pain meds that didn’t work.”
By February, Kinsey was home on hospice care. She spent time with her sisters, her boyfriend, Hunter, and her cat, Zombie, but turned away other visitors.
“It was too difficult for her, emotionally,” Amanda said. “Everyone she saw was a reminder of what she was going to miss.”
She knew when the end was coming, and told her family she wasn’t afraid.
“And I believe that,” Amanda said. “When she went, we saw peace, instantly.”
Kinsey’s cap and gown will sit on her empty chair at graduation, and her family will be there.
“It will be tough,” Amanda said. “But this whole journey, as tough as it’s been, has taught us a lot about life. We have a very long road, but we will heal, and we have to find a positive. For me, that is all the people she touched. She went from being nobody to being known by thousands of people, and all of them will carry her story with them for the rest of their lives.”
“Life Story,” posted each Saturday on Leader Publications’ website, focuses on one individual’s impact on his or her community.