Patient Stories 
It started with macaroni and cheese. At least that’s the way Kili Cole tells the story.
At age 11, Kili was a healthy girl who loved playing tennis, painting and playing the cello and clarinet. She’s a talented musician with aspirations of attending a performing arts high school and developing a career in music.
And the mac and cheese? Well, after enjoying a bowl, Kili found herself feeling shaky. “I thought it was probably nothing, but my mom wanted to get it checked out,” she said. “After I got tested, it turned out that I have diabetes.”
Type 1 diabetes
Kili has type 1 diabetes, a lifelong condition in which an individual’s pancreas is unable to make a sufficient amount of insulin, leading to high blood sugar levels. Many people with the condition eventually become insulin-dependent, meaning that they have to take daily injections of insulin or use an insulin pump.
Two years later, at age 13, Kili was still able to manage her condition without taking insulin, and she and her family wanted to put off insulin dependency as long as possible. “My doctor, Dr. Edelen, brought up Tzield as a possible treatment during one of my regular appointments,” Kili said.
“She thought Kili would be a good candidate for the treatment,” added her dad, Lance. “But she thought we might have to go to Sioux Falls for it.”
A new treatment
Tzield is a relatively new medication, given through IV infusion, that can help manage type 1 diabetes by delaying the progression of symptoms, including the need for insulin.
“Kili was an excellent candidate for the treatment, because though she was experiencing abnormal blood sugar levels, she wasn’t experiencing any symptoms and she didn’t need insulin,” explained fellowship-trained Pediatric Endocrinologist Rachel Edelen, M.D. “She was in stage 2 of type 1 stage 3, which is where we see patients needing to take insulin. Kili is otherwise a healthy girl.”
Tzield was approved by the FDA in November 2022, but hadn’t been used in Rapid City. Director of Infusion Services Brandi Tackett, PharmD., worked with Dr. Edelen, the pediatric nursing unit at Rapid City Hospital and Provention Bio, a Sanofi Company, the pharmaceutical company that makes Tzield, in order to coordinate making the medication available to Kili.
“Arranging for a new therapy does take some planning and coordination,” Brandi said. “Once we knew there was a patient identified, we worked to assure Kili would be able to get all the necessary infusions as soon as possible.”
Home for the holidays
Tzield is administered over the course of 14 days. Kili received her first infusion on Dec. 12, and she completed her final dose on Christmas Day. “It was a pretty good Christmas present to be done with the infusions,” Kili said with a laugh. “Although it wasn’t too bad.”
The infusion itself doesn’t take too long – roughly thirty minutes. But preparing the treatment added time to each visit, so Kili would spend at least an hour in a hospital room each visit. “The first seven days we were there almost three hours, because they were testing her white blood cell count, and it had to be sent to the lab,” Lance said.
“Then they tested it again I think on the 11th day,” Kili added. “Those were long days, but there were some days when we were only there for about an hour.”
Tzield can cause side effects that include headache, nausea, fever, joint and muscle pain and fatigue, but Kili only experienced fatigue after her infusions.
As far as side effects go, Kili’s experience wasn’t too bad. She experienced fatigue and a little nausea, but she didn’t have many complaints. “Mostly I felt really tired after getting the infusions,” she said. “And I did get sick at the end of the treatment — just a cold, but it made my blood sugar rise. I was so glad to be able to just go home afterward and sleep in my own bed, instead of having to stay in a hotel or something.”
Kili’s blood sugar has since stabilized, and although it has been within the normal range, she will continue to monitor it.
“I think the side effect that we saw the most was just that she was so tired,” said Lance. “We’d take her home and she would go and sleep for a few hours. Being able to do the treatment here was really a blessing, because I don’t think she would have been as comfortable if we were staying in Sioux Falls.”
Kili and her family were grateful that she could receive care close to home, but also for the quality of care she received. The nurses that administered the infusions put Kili at ease and made her as comfortable as she could be during the process. “The nurses were amazing. I don’t know how I would have gotten through it without them,” she said. “I remember when they first put my IV in, it was really scary for me, because it was the first one I ever had, but the nurses were singing and dancing the whole time, just to make me smile and not feel so scared about it.”
Tzield isn’t a cure for type 1 diabetes, but it does delay the progression of the condition, most notably the need to take insulin. “Kili was showing signs of moving toward insulin dependency,” said Dr. Edelen. “This treatment will push back her need to use insulin for two years. That’s significant.”
“She’ll be in high school at that point,” added Lance. “And then, who knows what will be available for treatment.”
What is Type 1 Diabetes?
Type 1 diabetes is a lifelong condition that, until recently, was commonly referred to as juvenile diabetes.
The future
As far as high school and beyond, Kili has big plans. She intends to audition for the University of North Carolina School of the Arts high school program. “I would really like to focus on music for my future career, and it would be great to be able to go there. And graduates can get free tuition for UNC system colleges, so it would be an amazing opportunity,” Kili said.
Tzield has a bright future in Rapid City as well. Now that the groundwork has been laid, it will be much easier for additional patients to have access to the medication. “The relationship has been established, so we’re able to get Tzield as needed. Working to get the medication here for Kili has the added benefit of ensuring that other patients would have access to it as well,” Brandi said.
What is Type 2 Diabetes?
Type 1 diabetes is a lifelong condition that, until recently, was commonly referred to as juvenile diabetes.
Her decision to get the treatment, and to do it in Rapid City instead of traveling to Sioux Falls, has opened the door for other patients to get the treatment, especially those who may not be able to travel to the other side of the state and stay for two weeks. “It feels nice to know that it isn’t just helping me, but will help other people too,” Kili said. “I’m glad I did it, but it was a long process and I was happy that I could go home after each session. I’m glad that it’s also available now to someone else who might need it.”