Toddler with rare disease finds lifesaving care locally

This paid piece is sponsored by Sanford Health.

Three-year-old Keira and mom Carrie Ann stuff a lot into their regular visits to Sanford Children’s Hospital.

“Today, we are here for Keira’s doctor’s appointment,” Carrie Ann explains. “We are so happy that we live here in Sioux Falls, that we are able to access this hospital.”

Greeting the family and making them comfortable is longtime child life specialist Wendy Jensen.

“If that means meeting Keira at the door with a sucker and talking about her special comfort item that she brought, that’s what we’ll do,” Jensen said. “We want Keira to feel like the castle is hers as well. Hers and everyone else who comes through the door.”

Courageously, Keira has been coming to Sanford Children’s, known as the Castle of Care, since she was a baby. That’s when a pesky rash led to a biopsy.

“It came back as a very rare blood disease called Langerhans cell histiocytosis,” Carrie Ann said.

Pediatric oncologist Dr. Kaye Wagner said, “It’s where your immune system basically attacks some of your normal cells. So we have to give chemotherapy to help get that under control.”

Wagner said Keira gets a week of chemo each month for the cancerlike blood disease.

“Dr. Wagner has been amazing,” Carrie Ann said. “Keira is getting the best treatment that there is out there.”

Specialty care close to home

Sanford Children’s uses a team approach in caring for kids. In addition to the more than 135 providers in 35 pediatric specialties, it has about 400 support team members specially trained to care for little ones.

Sanford Children’s Hospital also features child-friendly equipment, including a CT scanner decorated like an undersea adventure, and Freddie, a cheerful firetruck serving as a portable X-ray machine.

Many of these resources are made possible because of gifts through the Sanford Health Foundation.

“It is unique that we’re able to provide that care,” Wagner said. “It requires specialty training like someone with an oncology background like we all have. So it’s great to be able to provide that for families so they don’t have to leave the area.”

Sanford Children’s providers are the only board-certified pediatric hematology and oncology providers in South Dakota offering a full range of care.

It saves Keira’s family time and money, allowing them to focus on her health.

Still, the long journey is sometimes hard to handle even for this dedicated mother.

“It’s just, I know the week I have ahead of me, and every week is always a hard week. I usually have a breakdown on her week of chemo,” Carrie Ann said. “But we get through it, and it’s almost over.”

Wagner believes Keira is “really doing great. We’re getting a good response to the therapy. It can be a very long process with this particular disease, especially in the skin like Keira has. Great prognosis and she’s continuing to do very well.”

‘We know we have support’

Jensen marvels at her patient, saying “she’s just the bravest little peanut to be able to step into these situations.”

Super-brave but never alone. The castle, the technology and the team inside these halls are designed specifically to empower children and their families.

“When I see people like Keira and I get to walk alongside these families, that is truly an honor for me to get to be a part of,” Jensen said. “When she says my name and she comes running to me even though she didn’t want to be here today, that really does bring joy to my heart.

“If you’re having a bad day, you can’t once you’re around her. She just spreads joy.”

Bringing resiliency to everyone she touches.

“We have a very strong faith, and if we did not have that faith, I don’t know how we would make it through,” Carrie Ann said.

And gratitude for every new day.

“Thank you for providing life-giving medication to my child,” Carrie Ann said. “Providing a place where we feel comfortable. That we can go through something that is one of the hardest things we will ever go through in our life. We know we have support, and we know we have friends that are there with us through the journey.”

Learn more about Sanford Children’s Hospital at sanfordhealth.org. It’s home to the region’s only Level IV neonatal intensive care unit. Sanford Children’s also features a 24/7 pediatric intensive care unit, South Dakota’s only children’s oncology group for pediatric cancer, a Level II pediatric trauma center and the state’s only pediatric emergency medicine team.