BY KATIE KRAWZAK, DNP APN CPNP-AC

I walk into a patient room. It’s dark – the teenagers’ rooms often are. I introduce myself to Nora, who is sitting in bed writing in a journal. She is kind, quiet, and very polite. She stops what she’s doing to talk. 

“Hey Nora, I’m Katie. I’m a nurse practitioner with the advanced care team. What are you up to?”

“Just writing in this journal they gave me. I love this quote I found, it’s about truth.”

We chat for a minute, and I seamlessly transition into my introduction of our team. I share how our advanced care team helps to support all kids with a cancer diagnosis. We work to address their symptoms throughout treatment, to support them and their families, and work to achieve goals that are important to them. Nora nods along, then shares quietly about herself when asked. She’s a junior in high school; she loves to spend time with her friends; she loves to eat. After a bit, I excuse myself and explain I will be back tomorrow to check in.

Back in the office, I write her progress note. Progress notes are a necessary evil for providers – ensuring we communicate clearly and consistently to other members of the care team and track the work we do with patients and families. While I’m documenting her history, my recommendations for ways to treat her nausea, and noting other services that should meet her, I can’t stop thinking about her truth quote. Ultimately, I head back to Nora’s room. 

“Nora, when I was in here before, you shared that you love the quote you were journaling about. Will you share the full quote with me?”

She easily repeated it from memory, “Rather than love, than money, than fame, give me truth.” [Henry David Thoreau]

“That feels really important, Nora. Can you tell me more about what it means to you?”

Nora explains that in the face of her diagnosis, she kept hearing that quote repeat in her head. It is one she has loved for a long time, she explains. She wants her life to be “big and full, but I don’t have to be famous or something for that to happen.” She admits to me that while the news she is hearing scares her, she wants no sugar coating, no skirting around the obvious, no empty guarantees. “I don’t have time for anything but the truth.” As I often am in my work, I am humbled by the strength and grace of this young woman facing a devastating diagnosis. 

We make a plan that involves a promise I’ve learned to honor from other amazing palliative care providers who have guided my growth in this field. I tell Nora I can’t make any guarantees about her future, but I can guarantee her these things:

I will always be honest with her. 

I will always listen to her questions and respond to them directly. 

And I will always tell her when I am worried. 

The days pass, then weeks, then months. We learned other things about Nora – things far more important than the determined tumor spreading through her despite chemotherapy, surgery, and radiation. We learned about her love for fanny packs, her job at Dairy Bar, her wigs which she treated as her babies. We learned about her family, the ever-present parade of friends in and out of her hospital room, and we celebrated with her when she was named Prom Queen. Life lived on through relapses, progression, and treatment. Life loved on.

Again and again, our team was able to draw from that quote: one simple line from one meeting with Nora. We knew how imperative the truth was to her. I lost count of the conversations that began with some combination of that first conversation. As determined as Nora’s cancer was, her spirit and grit remained true. 

316 days later (it matters, and it doesn’t matter, right?), I entered Nora’s room to process after the oncology team had left. Her cancer had progressed further. Our options to treat the ever-evasive tumors were dwindling. She looked up at me under eyelashes heavy with tears. 

“Are you worried?”

“Yes.”

“I want to be here at the hospital. For the end.”

We made plans. Time passed. Nora went home, and eventually returned. Her room was full of music, of friends, of family, of home cooked food. Her room was full of truth.

I write little of Nora’s actual death, because while it was an important part of her story, she wanted it to be the least of her story. Her story was her life, one that she continued to live as brightly as she could, one we were privileged to bear witness to. 

Knowing Nora has made me a better provider. I listen more closely. I look for the one line in a whole conversation that becomes the thread that weaves the rest of a story together. Her legacy lives on. 

Katie is an acute care pediatric nurse practitioner and a part of the Pediatric Advanced Care Team (PACT) at a children’s hospital in the Chicago suburbs. She is a firm believer that finding connections with patients and families builds authentic relationships and optimal care. She has a passion for seeking out multimodal therapies that allow children with complex medical illness to live their best and fullest lives. Prior to being a palliative care provider, Katie was a nurse in the neonatal intensive care unit for almost ten years. She is a mother of three and enjoys baking in the middle of the night, 72 degree weather, and being outside with her loved ones.