Once we discovered that Kenzie had inflammation around her heart, everything changed. A new heaviness set in—an ever-present weight of concern. What didn’t change, however, was the amount of inflammation that remained. Despite rounds of steroids and various treatments, the extra fluid around her heart wouldn’t budge.

Two weeks passed. Then four. Then six. Each echocardiogram brought the same results: no improvement. Kenzie had pericarditis.

Kenzie had pericarditis.

One thing that baffled me during this time was how her joint inflammation seemed to be improving, but her heart condition remained unchanged. I knew it was time to get her rheumatologist and cardiologist on the same page. After multiple phone calls, I finally requested the two of them speak directly.

That conversation led to a phone call from our rheumatologist.

“Hello, Mrs. Spiess? I wanted to let you know I’ve spoken with Kenzie’s cardiologist. We need to pursue further testing to rule out a few possibilities. I’ve already sent in the lab request, so please get those completed as soon as you’re able.”

Great. More labs.

Kenzie had already endured so many blood draws. Still, I hoped more tests would bring more answers.

The next day, I took her in for another round. When the results came back, I noticed the tests were for some serious conditions—many of which thankfully came back negative. But something inside me knew we were heading toward another major turn.

A week later, our rheumatologist called again, this time requesting a face-to-face appointment to discuss the results. A familiar sense of dread washed over me, even as I prayed we were finally getting closer to clarity.

Seven Days Later

Sitting across from our rheumatologist, the tension in the room was thick. Not because we didn’t respect or like her, but because it felt like the stillness before a storm.

Most of the time, I did these doctor appointments all on my own. Ryan had yet to take Kenzie to any appointments. It was nice to finally have a support system there when bad news hit.

“I’ve been in contact with Kenzie’s cardiologist ever since her pericarditis was discovered,” she began gently. “I know this has been hard, but I believe it confirms what I’ve suspected for a while now.”

“Okay… what are we looking at?” I asked.

A New Diagnosis

“Kenzie has what’s called systemic juvenile idiopathic arthritis. It’s a very rare and serious form of juvenile arthritis—one that doesn’t just affect the joints. It causes inflammation throughout the entire body. “

Kenzie has a rare and serious disease called systemic juvenile idiopathic arthritis.

My heart dropped. Fear flooded in.

She continued, “This explains the recurring fevers and nighttime rashes. Those symptoms are actually quite common for children with this diagnosis. Another common thread in kids with this disease is a history of spinal meningitis—we believe that’s what triggered it in Kenzie.”

“So… how do we treat this?” I asked.

“We’re no longer dealing with an autoimmune disease,” she said. “Kenzie falls under the autoinflammatory umbrella now. It’s more serious than we initially thought. But fortunately, we treat it in much the same way. She’ll need ongoing echocardiograms and regular blood work. We have to stay vigilant to prevent the inflammation from damaging major organs.”

“What happens if it gets out of control?” I asked, voice trembling.

“She’ll likely need to be hospitalized, and we’ll have to fight aggressively to protect her organs.”

Silence.

“Do you have any questions?” she asked.

I shook my head. “No.”

A packet of paperwork was coming my way, but I couldn’t hear anything else she said. My mind was already spiraling—paralyzed with fear for my daughter’s life and well-being. I did have questions. But none that could be answered.

As my husband and I waited for the discharge plan, we sat quietly. The silence followed us out of the office, into the car, and down the road—until finally, he broke it.

“You were right,” Ryan said. “You were right about all of it. You knew how serious this was, and I didn’t listen. I’m so sorry.”

“You were right,” Ryan said. “You were right about all of it. You knew how serious this was, and I didn’t listen. I’m so sorry.”

And at those words, I burst into tears.

I didn’t want to be right. I wanted to be very wrong.

Time to Grieve

In that moment, I grieved. I grieved for my child—the one I was desperately trying to keep alive and thriving. I grieved for my oldest, the one I couldn’t give enough time or attention to. I grieved for my marriage, which had grown tense and strained under the weight of this journey. And I grieved for myself—because my life was unraveling.

What I didn’t realize at the time was that this grief would soon open the door to bitterness and exhaustion. That depression was waiting for me. That a year later, my husband and I would be separated. That while my daughter would ultimately be okay, I would not be.