Kidney cancer diagnosis leaves family reeling

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

Jeremy and Kelsey Frey couldn’t believe what the doctors were telling them.

Cancer? Their daughter has cancer?

Hadn’t they already been through enough?

The couple from northern Indiana had already absorbed three devastating blows – the deaths of three of their quintuplets born prematurely in October 2022 at Riley Hospital for Children.

Their surviving babies were discharged from Riley one year ago this month.

Now, the parents of five struggled to make sense of this latest shattering news.

But then, as parents do, they pushed through.

Gracie Frey, who turned 8 last month, was diagnosed with Wilms tumor, a rare kidney cancer most often found in children, earlier this month.

It started with a visit to her doctor for a wellness checkup March 11. Jeremy and Kelsey didn’t have any reason for concern, but they did wonder if she might have a dairy intolerance because she had complained of stomach pain a few times.

She otherwise looked and seemed healthy, they said, though in hindsight, perhaps there was some mild abdominal swelling.

After feeling the little girl’s abdomen and noting she didn’t seem to have gained weight in two years, the doctor ordered bloodwork and an ultrasound.

Two days later, Gracie got that ultrasound. While her parents waited to hear the results, they moved ahead with another difficult appointment they had scheduled that day – selecting the headstone for the graves of their three babies who passed away.

Before they had even sat down for the appointment, the doctor called with the results. A mass in their daughter’s abdomen, which was pushing on her other organs, was consistent with Wilms tumor. The pathology report would later confirm the Stage 1 diagnosis.

They were told to pack their bags and come to Riley the next morning.

“We had no game plan at that point,” Kelsey said. “We were just trying to process all this.”

They started by trying to explain the news to Gracie, who expects honesty, her mom said.

“She loves to know everything, and she’s so smart.”

What began then was a blur of follow-up scans, consultations and surgery. Ironically, the couple’s two surviving quints, Luke and Avie, had an appointment with their nephrologist at Riley the day after Gracie got her ultrasound. All three kids and their parents made the three-hour trip to Riley, while family members cared for the other children at home.

“Luke and Avie’s kidneys were great, thankfully,” Kelsey said.

But Riley oncologist Dr. Marissa Just met them at the toddlers’ appointment, instructing them to head to the emergency department for another CT scan and ultrasound for Gracie, after which she would be admitted to the hospital, while Jeremy took Luke and Avie home.

Last Monday, just one week after that well-child checkup, Gracie went into a five-hour surgery. Dr. Barrett Cromeens removed her right kidney, along with the massive tumor that had attached itself to the kidney and was compressing her other organs.

When he emerged from the operating room, he told her anxious parents the tumor was bigger than a cantaloupe but smaller than a basketball.

They had caught it early, and surgery was successful, but Gracie, who was able to go home Friday, will need chemotherapy and close monitoring to ensure that any remaining tumor cells don’t mutate.

“It’s so hard to even say the words,” Kelsey said over the weekend. “How are we here again?”

“We are in survival mode again,” Jeremy said.

Meanwhile, they try to stay strong for all of their kids.

“You can’t stop and break down. You have to keep going because your kids need you,” Kelsey said. “But it’s hard. It feels like our family has been through the wringer.”

Gracie has been a trouper, her parents say.

“She’s doing really well. We are struggling to get her to slow down now that we’re home. It’s just so funny how resilient kids are.”

When Gracie’s parents feel their energy flagging, they know they can count on their friends and family, as well as the thousands of prayer warriors who follow their Frey Family Adventures Facebook page, started when they were expecting their quintuplets. That support carried them through the hard times at Riley a year and a half ago, and it continues.

“Jeremy and I were so overwhelmed with emotion when we went on Facebook the night before her surgery and we saw everybody had changed their profile picture to Grace, saying prayers for Grace. They carried us through when we couldn’t carry ourselves through.”

The same can be said for their Riley family.

“The NICU staff that cared for our babies showed up for Grace too,” stopping by to visit and drop off gifts, Kelsey said.

“It was incredible to know that even though our family was three hours away taking care of our other kids, we still had family and support at Riley because of the journey we went through a year and a half ago.”