Teen gives her tumor 1 out of 5 stars

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Kiersten Vetter is a little on the shy side, but she has a wicked sense of humor, a wit that has only sharpened since she underwent surgery, chemotherapy and radiation for a rare brain tumor.

When Riley Children’s Health neuro-oncologist Dr. Alex Lion asked Kiersten during a recent visit if she was experiencing any headaches, she said nothing, choosing instead to slyly point to her parents, Scott and April, who had joined her in the exam room.

They laughed, he laughed, and she smiled, delighting in her signature sarcasm, also evidenced by the T-shirt she wore, giving her tumor one out of five stars.

For Scott and April Vetter, this is the child they know and love, a child who freely admits she prefers animals to people. And who doesn’t shy away from speaking her mind.

“She likes to ruffle my feathers,” April said.

Kiersten, who just turned 13, has had a rough time over the past 18 months or so. She was 11 when the real headaches started – back in August 2023.

The youngest of three siblings, she and her family live on a farm on the Indiana/Ohio line, in the tiny town of Hicksville, Ohio. August is a busy month for the family, with all three kids showing animals in 4-H. Kiersten, who describes herself as “farm girl-tough,” raises pigs and goats.

SEEKING ANSWERS

Her mom remembers how Kiersten woke up vomiting one morning in early August 2023. She went back to bed and seemed to be fine later. The next week, it happened again – twice. When it happened the following week – county fair week – April called the pediatrician, who theorized it was anxiety-induced acid reflux.

School started the next week, and Kiersten made it to only one or two days of classes before it happened again. Off they went to see the nurse practitioner at their pediatrician’s office, who suggested it was a body image issue, a notion both mom and daughter rejected.

It was about that time when April’s mama bear instincts really kicked in, and she asked for a referral to a Riley gastrointestinal specialist, but the appointment was a few weeks out.

The next day, Kiersten vomited again, and April took her straight to the emergency department at a Fort Wayne hospital, which eventually transferred her via ambulance to Riley, where mom and daughter arrived at about 1:30 in the morning.

“They knew within an hour or so what it was,” April said, recalling how multiple doctors met with them in the ED at Riley, trying to gently break the news that Kiersten had a rare malignant brain tumor called a teratoma.

A teratoma is basically a mass of tissue, including hair, muscle, bone and teeth, derived from a person’s own germ cells. The cause is not completely understood.

As Riley neurosurgeon Dr. Jignesh Tailor explained to Kiersten and her parents: “It’s kind of like a little mini-Kiersten inside of her brain.”

The tumors themselves are rare, he said, especially in the brain, and while he had seen them before, this was the first one he’d operated on at Riley.

It was an anxious time for the entire family. One person who helped relieve some of that anxiety on Kiersten’s part was certified child life specialist Maddie Rodriguez, who formed a tight bond with the young girl, especially in those early days.

“Maddie is a big part of Kiersten’s story,” April said. “When the nurse said that child life was coming in to see her, we had no idea what that meant.”

They would soon find out.

“Maddie flung the door open and said, ‘what’s going on in here, kid?’ We all looked up, like who is this lady? But Kiersten instantly clung to her.”

BUILDING TRUST

Remember how Kiersten said she doesn’t really like many people? Well, count Rodriguez among her favorites. The two just clicked.

“I still remember meeting Kiersten and her family for the first time,” Rodriguez said. “Kiersten is tough and may seem like a tough cookie to crack, but once she opens up, she is fierce, witty and so incredibly kind. As child life specialists, we work to see the patient as an individual and a child first. Although this new and devastating diagnosis was lingering over Kiersten and her family, I knew in order to help gain Kiersten's trust, we had to get to know one another as individuals first to build that connection.”

So, while her mom and dad stepped out of the room, Kiersten and Rodriguez spent time talking about her interests, not her diagnosis, taking the time to let Kiersten be a kid.

“We talked about goats and pigs, we played Barbie fashion, we talked about school ... this may seem small, but our trust and rapport clicked and continued to grow from that moment,” Rodriguez said.

That was key in Kiersten’s treatment, both Dr. Lion and Dr. Tailor said.

“Maddie was a big part of that surgery discussion and helped her get through that,” Dr. Lion said. “Our team has always been multidisciplinary. I love being a neuro-oncologist, and I love being a physician, but I need the nurses and child life specialists who sometimes connect with patients more than I can.”

“The child life team made a big difference for her,” Dr. Tailor agreed, recalling how Kiersten initially was reluctant to talk much.

When Kiersten woke up after her first surgery in early February 2024, the first person she asked for was Maddie, her mom said.

Unfortunately, the neurosurgery team at first was only able to remove about 5% of the plum-size tumor because of its thickness and location. It was as hard as a rock, April recalled.

Dr. Tailor, who had consulted with colleagues at Johns Hopkins and St. Jude, among others, wanted to go back in to remove more, fearing without additional surgery, Kiersten would not survive more than six months to a year.

CHILD LIFE SUPPORT

“We didn’t handle it really well,” April said. “We disagreed on the surgery. I was worried about her having another operation so close to the first one.”

Rodriguez was asked to come in to talk with Kiersten and her parents. She came in with options A, B and C on a poster board, April recalled.

“Maddie was pretty crucial in all of it,” she said.

Kiersten looked to her dad for his opinion, and together they decided to go ahead with another surgery – on Valentine’s Day 2024.

Rodriguez was there to take her down before surgery, another all-day operation.

April remembers Dr. Tailor talking to them late that night in the PICU.

“He said, ‘I think we got it all.’”

She was almost too scared to believe it, but follow-up scans confirmed that the tumor was gone. And repeat MRIs, lab results and visits with Dr. Lion every three months reaffirm that good news more than a year out from treatment.

“I’m so proud of her,” Dr. Lion said during their recent follow-up appointment. “She has been so courageous.”

While the type of tumor Kiersten had is not common, he said Riley sees a few each year and the team is part of a nationwide group that helped develop treatments to cure this kind of cancer in children.

WORKING AS A TEAM

One of the first people Kiersten sought out when she returned to Riley last month was Rodriguez.

Asked about their bond, Rodriguez said she and her colleagues worked to help Kiersten feel like she was a part of her own care team and learned to advocate for herself.

“We wanted to make sure she understood in a developmentally appropriate way her brain tumor diagnosis, the different procedures she had to encounter, her cancer diagnosis and what treatment would look like,” Rodriguez said.

“We did this through interventions like creating Play Doh brains together for teaching, breaking down the big medical words doctors use, practicing port access through medical play, and fully assessing that she understood what was going on with her body.”

She said she is lucky to work alongside physicians who understand and rely on the child life team to support patients and families.

“Dr. Tailor, Dr. Lion, Dr. (Chiari) Flores and I worked as a team to create an emotionally safe approach to discuss and explain with Kiersten what the different treatment options looked like moving forward,” Rodriguez said. “During these conversations, I was so incredibly proud how she advocated for breaks, took the time to feel her emotions, and felt safe to ask me the hard questions that I could then relay to Dr. Lion and Dr. Tailor.”

Today, Kiersten is back home on the farm, gearing up for the busy summer season with the animals in her care. Just last week, she and her family returned from a Make-A-Wish trip to the Bahamas, where Kiersten was able to swim with baby pigs (apparently that's a thing) and the family swam with dolphins.

While she adored swimming with pigs and dolphins, Kiersten told her mom her favorite part of the trip was playing tag as a family in the swimming pool.

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