Leaning into joy while kicking cancer to the curb

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

The ringing of a bell never sounded so good.

As Ryan Krueger gave three swift tugs on the golden bell handle, signifying the end of his cancer treatment, his parents, fiancée and other family members cheered in the cramped hallway at the Riley Outpatient Center.

Watching online were dozens more friends, family and colleagues spread out around the country.

It was the best kind of party. There were tears of relief and joy. There was laughter. And there was gratitude.

Krueger is not your typical Riley Children’s Health patient. He is 27, a graduate of Butler University and a product manager for a California tech company.

His introduction to the children’s hospital came 2½ years ago after debilitating migraines landed him in the IU Health Methodist Hospital emergency department multiple times. Often, the pain was so bad he was unable to speak.

It turns out they were not migraines at all, but something more frightening: B-cell acute lymphoblastic leukemia, doctors at Methodist told him in the fall of 2020, after a spinal tap to check for meningitis revealed the cancerous cells in his spinal column.

And his best bet for treatment, they said, was Riley at IU Health.

“They said the team over here was far more experienced and knew exactly how to treat it,” Krueger said.

That’s because B-cell ALL is a type of leukemia most often seen in pediatric and young adult patients (70%), and as Indiana’s only nationally ranked pediatric cancer program, Riley has the experience and expertise to treat the disease.

Riley oncologist Dr. Lindsay Blazin, who said about a third of her patients are over the age of 18 at diagnosis, has seen Krueger through the long months of treatment – both inpatient and outpatient – and she was there last week when he rang that celebratory bell.

“Ryan had 11 hospital admissions, received 19 lumbar punctures and underwent 861 days of treatment,” she said.

His case was a peculiar one, she acknowledged. Although a spinal tap found a large number of leukemic cells in his spinal fluid, multiple blood tests and bone marrow aspirations – the gold standard test for leukemia – did not detect leukemia cells in his marrow, which is typically where the disease starts.

“It is still a bit mysterious to me as to how and why he had all these leukemic blasts in his spinal fluid without having any identified in his bone marrow in multiple tests,” Dr. Blazin said.

But after consulting with multiple experts at Riley and other institutions around the country, the consensus was that there either had to have been leukemia cells there at some point, or they were below the level of detection, so the standard treatment regimen for the disease was indicated.

The treatment was rigorous and exhausting, and Krueger’s health was further complicated by neurotoxicity to one of the chemotherapy drugs, which left him unable to speak for a short time. In addition, he suffered appendicitis and required surgery at Riley during treatment, at a time when he had basically no immune system.

Add to that the worries about a new job and health insurance, and the stress was pretty high, he said. His fiancée, Anna Rauh, and his family saw him through all the ups and downs.

“I can’t imagine what the little ones have to deal with here,” he said when asked how it felt to be receiving care in a pediatric hospital. “It took a toll on me; I can’t imagine if you’re a baby or a little kid going through this.”

As the youngest of four siblings, among them an anesthesiologist and a pharmacist who were able to help him navigate the medical world, Krueger is grateful for the support that surrounded him on good days and bad.

“It was definitely frustrating to constantly have to go to the ER and it didn’t seem like anything was helping,” he said when he originally thought he was suffering from migraines.

“If they would have come back and said, ‘this is going to be your life; you’re going to have to come to the ER every few weeks for treatment,’ that could have been worse,” said Krueger, who blogged about his cancer journey at Giving It My ALL.

“I don’t want to diminish the diagnosis that I have because it could have been life-threatening,” he added, but if doctors had told him he just had to live with the chronic, debilitating condition, it would have been worse in his mind. At least with ALL, he could look forward to a relatively normal life after treatment.

“As soon as my mind got past what it was, it was sort of a relief to just know that there was an answer for why I was feeling so poorly.”

And, as a Downtown Indianapolis resident, he said he feels privileged and blessed to be so close to Riley, knowing that many patients and parents travel long distances for care.

Being diagnosed in the middle of COVID made for additional hardships, but Krueger says he appreciated the care and camaraderie of his nurses, some of whom were in on his plans to propose to his girlfriend in San Diego. While they haven’t yet set a date, the couple will be married in the bride-to-be’s hometown of Louisville.

Dr. Blazin, who describes her patient as “a sweetheart,” is pleased to see him doing so well today.

“He is in remission, and we anticipate he is going to have a long and happy and healthy life.”

In a blog post March 30, a few days after Krueger rang the Riley bell, his fiancée thanked friends and family for their support during a “hellish” journey.

While acknowledging undercurrents of anxiety going forward, Rauh said the couple will not give into fears for tomorrow.

“Every single day will be a celebration from here on out. Everything we do will be a chance to lean into joy, be present and grateful.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Maureen Gilmer