Sharing Her Story

Eating dessert is a special treat for most kids. For 8-year-old Elinor Rowe, it was an occasional necessity. “If her blood sugar ever went below 110, her doctor suggested we give her a bit of ice cream,” says Elinor’s mother,
By Savannah Waszczuk

Eating dessert is a special treat for most kids. For 8-year-old Elinor Rowe, it was an occasional necessity. “If her blood sugar ever went below 110, her doctor suggested we give her a bit of ice cream,” says Elinor’s mother, Megan. “Ice cream was good because it had fat, but it also had carbs. This combination was good for Ellie’s blood sugar overnight.”

Megan is sharing details from the early days of Elinor’s (or Ellie’s, as she calls her) type 1 diabetes diagnosis. “Before she got her current continuous glucose monitor (CGM) and insulin pump, we had to test her blood sugar two times overnight—once at midnight, and once at 3 a.m.,” Megan says. “I’ll never forget the first time I woke her up at midnight and said, ‘Okay, I’m going to give you some ice cream.’ She thought I had lost my mind!’”

Fast forward six years, and Ellie is now a freshman in high school, a published children’s book author and a master at managing her type 1 diabetes—no midnight ice cream sessions required. Read on to learn how she is using her experience with type 1 diabetes to help other kiddos, and how Launch is helping her on the way.

November 2016: The Diagnosis

Ellie describes the day she was diagnosed with type 1 diabetes as a bit of a conundrum. “It’s weird, because I remember that morning so vividly,” she says, thinking back to what she experienced as a then 8-year-old kid. “I remember exactly what we did on the playground before my mom came to pick me up,” Ellie says. “I remember how one of my friend’s lost something, and she was looking for it as we were leaving. I really remember all the details up until they said, ‘You have diabetes.’ It was all a blur from there.”

Ellie’s mom chimes in, explaining why Ellie’s memories play out this way. “That all makes sense, Ellie, because you were very, very sick,” Megan says. Just hours after Ellie was diagnosed, she learned she was in diabetic ketoacidosis, and she was immediately taken to Children’s Mercy Kansas City by ambulance.”It was November 18,” Megan says. “They let me ride with her, and my husband followed us. They played Christmas carols for her and gave her warm blankets.”

Adjusting to Live with Type 1

After numerous tests and multiple doctor and specialist visits in Kansas City, Ellie was sent back home prepared to navigate life with her new diagnosis—a process that took a bit of adjusting at first. “I had to learn how to divide and calculate the carbs in a serving of my food to determine how much insulin I needed,” Ellie says. “That’s not something that every third grader knows how to do!” Ellie had to test her blood sugar regularly, too—before she ate, before she exercised, two hours after she ate, and any time she felt dizzy. She also had insulin injections often, and she went to school with a note that listed the carbs of every item in her lunchbox.

Thankfully, things became easier a year later when Ellie received her new insulin pump with a CGM that helps regulate her blood sugar and sounds an alarm if there are concerns. “I felt like I had a little bit more freedom then,” Ellie says. “As a kid, when you have to stay behind from your friends to read your blood glucose—that’s not very fun. And being 8 and 9, I didn’t really enjoy looking at needles every single day of my life.”

Living, Learning, and Using Launch

While Ellie faced many challenges due to her diagnosis, she also learned a lot. So much, in fact, that she wrote “Type One Diabetes from A-Z” for a fourth grade class assignment. The book features each letter of the alphabet describing a part of life with diabetes, and it’s formatted in a way that is ideal for sharing with children who live with a type 1 diagnosis. “The book was purchased for all of the nurses at Springfield Public Schools elementary schools, and a diabetes educator at Springfield’s Mercy Hospital purchased copies to share with patients,” Megan says. A portion of proceeds from the book are donated to the Juvenile Diabetes Research Foundation.

In addition to sales, Ellie also makes an effort to share the book herself—she has attended a librarian conference to discuss the book and has gotten copies into several regional libraries, and she also makes elementary school visits to read to classrooms and educate students.

Ellie is able to make these visits—and also able to better manage multiple other aspects of her life with diabetes—with the help of Launch. “I have three in-person classes at Central High School, and my other five classes are online with Launch,” she says. “I go in-person every other day, so I schedule my readings and things like that on my Launch days.”

This hybrid schedule also helps with her doctor’s appointments. “We still go to Kansas City for Ellie’s endocrinology care,” Megan says. “We’re able to schedule those appointments on Launch days, too.” And perhaps the best part of Launch is that Ellie can work at a time that’s works best for her—even when she isn’t personally feeling her best. “I used to go to Springfield Lutheran School,” Ellie says. “If I ever had a day where I was feeling sluggish, I’d still have to go in. But with Launch, I can sleep in a bit and then do my work in the afternoon. I’m able to give myself a little bit of grace.”