Riley mom: “I never thought this day would come”

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

Six-year-old Teagan is a Riley kid through and through. Her last name is Riley, her dad was a Riley kid, and she has spent the past two-plus years in the care of the Riley Children’s Health oncology team as she battled leukemia.

Thursday was a day for celebrating though, as the kindergartner and her family converged on the oncology clinic at Riley Hospital at IU Health North to ring the bell, signifying the end of her long treatment journey.

Teagan, her parents, Adam and Santana Riley, sister Skylar, grandparents and other family members alternated between tears and cheers as they turned the page in the story that began in the summer of 2023 when Teagan was not quite 4.

It started with leg pain, fatigue and unexplained bruising, Santana Riley recalled. “She had no energy to do anything.”

The Kokomo family went to IU North on July 31, 2023, and received the devastating diagnosis – B-cell acute lymphoblastic leukemia. Treatment started the next day at Riley Hospital in Downtown Indianapolis.

“It turns your whole life in different directions,” Santana said. “We just didn’t expect it.”

No one does, says pediatric oncologist Dr. Rachael Schulte, who has walked alongside Teagan and her family for the past 26 months as the little girl endured intense chemotherapy, 20 spinal taps, three bone marrow biopsies and 15 transfusions, followed by more than a year of chemo pills at home and close monitoring as part of the maintenance phase.

“You’ve been through a lot, and you’ve done amazing, and your family has done amazing,” Dr. Schulte said Thursday, as Teagan prepared to ring the bell in the oncology clinic.

Dr. Schulte presented her young patient with a medal to signify the end of her journey, along with a certificate, but it was the cookie and toys she received that really brought forth the smiles.

“It doesn’t feel real,” Santana said before Teagan rang the bell. “I never thought this day would come.”

Because the little girl was so young when she was diagnosed, she doesn’t remember life without leukemia, her mom said. But the family is eager for a time when their world does not revolve around blood draws, spinal taps, chemotherapy and transfusions.

“The first nine to 12 months were the hardest,” Santana said. “She lost her hair … the summer of 2024 (after Teagan had entered the maintenance phase of treatment), we thought she was having a relapse.”

A biopsy came back negative, a relief after Dr. Schulte herself drove to pick up the results from the lab on a holiday weekend to put the family at ease.

The physician is among many people the family has become close to over the past two years.

“They comforted us when we were going through the hardest times and just made us feel loved,” Santana said.

“You can tell they really care for Teagan,” Adam said. “It’s not just their job.”

Dr. Schulte affirmed that sentiment as she talked about why she went into pediatric oncology.

On top of working in a field where scientific breakthroughs continue to give patients better treatment options, she said, “I get to (have) amazing long-term relationships with families. I can’t change the fact that they have leukemia … but even on the harder days, I still feel like our team can make such a difference in the journey.”

That difference was on full display Thursday as team members joined family to celebrate the end of Teagan’s treatment.

“We are very optimistic that Teagan will remain in long-term remission,” Dr. Schulte said.

For those who might be in the beginning of their cancer journey, Santana acknowledges that it’s hard to see the light at the end of the tunnel. But have faith, she said, adding that Teagan was the one who encouraged her.

“In the beginning, I wanted answers to everything right away. The doctors couldn’t always say, and that’s hard as a parent, but you just have to trust them.

“They know what they’re doing, and they’re going to do everything in their power to give you that moment for your child. That’s all you want as a parent, to know that your child is taken care of.”

Adam and his parents knew from the start that Teagan would be taken care of at Riley. They lived it 37 years ago when Adam was born with hypoplastic right ventricle, a serious heart defect, and required surgery by Dr. John Brown.

He returned every year for checkups with his cardiologist, Dr. Randy Caldwell, until Dr. Caldwell retired in 2020. Three years ago, he underwent surgery to put in an artificial valve.

“It was weird to go back to Riley with my daughter, but also comforting,” he said. “Obviously, I was distraught, but there was a level of trust there, knowing we’re in the best place. I wouldn’t trust anyone else, and it’s not just because our last name is the same.”

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