Friendly, active, playful with her sister and friends, then 6-year-old Kylie’s acute myeloid leukemia (AML) diagnosis has challenged her and her family—including navigating care during COVID-19.
“The day she was diagnosed hit us like a ton of bricks,” said Kylie’s dad, Dave.
After they received the news in the emergency room in March of 2019, Kylie and her family were taken to a room on the fifth floor where they were given information on the condition, and what additional tests needed to be done. Two days later, they discovered she had AML.
“I just got tunnel vision. But I knew we were in the right place to get her help,” Dave said.
Kylie’s treatments and her Children’s Minnesota family
Kylie’s first stay at the Children’s Minnesota lasted for seven months, being able to come home only four times for a couple of weeks. It was during that long stay that Kylie and her family grew close to her care team – nurses, doctors, The Dude and the Geek Squad team.
“The nurses were definitely one of the best things at the hospital. They are trained to do the medical stuff, but the personal touch they had and brought to Kylie was so amazing,” said Dave.
One nurse in particular, Sydney Gilbertson, made Kylie’s experience truly special, despite her ongoing fight through treatments.
“It was Easter 2019 and my wife had hidden eggs in Kylie’s room for an Easter egg hunt. Kylie ended up keeping one egg for the remainder of treatment,” Dave recalled.
Sydney and Kylie would hide the egg for each other all over the 7th floor hallways for each other to find. “It was so sweet to see them having fun,” said Dave.
The family even nominated Sydney – and she received – a Daisy Award for her above and beyond care.
Star Studio and the Geek Squad team became close friends of Kylie’s, as well. During her stay, she looked forward to visits from The Dude – playing games and catch, and taking time to color together. And when she was able, she enjoyed making her own visits down to the Geek Squad to hang out and play video games in their office.
Going home—then a challenging relapse
Kylie went home in October 2019. “It was actually bittersweet to go home because we had formed such strong bonds with her care team, members of the Geek Squad and The Dude,” said Dave. “Kylie and our family were so excited to be done with the medical part of treatment. However, we had an emptiness inside about leaving the nurses, staff and doctors that were our family for seven months.”
Since her release, her family took her on a Make-A-Wish trip to Disney World in December. She resumed her active life, doing gymnastics and restarting her swimming lessons. But despite her promising energy through the following summer, blood draws indicated that something was not quite right, and a bone marrow biopsy was scheduled.
Care during COVID-19
Dave recalls how the relapse diagnosis affected the family, and how their Children’s Minnesota family helped them through a particularly challenging time: “We learned that Kylie had relapsed in September 2020 when we got a call from her doctor following a bone marrow biopsy. COVID-19 had a big impact in the four weeks Kylie stayed at the hospital for treatment—no pet therapy visits, no in-person Star Studio and no visits from anyone other than mom and dad. Not even her little sister could visit.”
Despite COVID-19 restrictions, Dave still saw how the Children’s Minnesota team went above and beyond to help make Kylie’s hospital stay easier on her. “There were still many laughs and fun times. Thankfully, Star Studio was working virtually so she was able to talk to the Dude. And the doctors, nurses and staff were more than willing to do more than just tend to medical needs.”
Giving back to Children’s Minnesota
Kylie’s family is looking forward to their third Walk for Amazing, especially as it is the second one that Kylie will be participating in. “We get team members from all over the country, and even when it’s a virtual event, we can get family and friends to join us from their homes,” said Dave. “Children’s Minnesota provided outstanding care for Kylie and helped to save her life. This is just one way we can give back.”
Children’s Minnesota Virtual Walk for Amazing
Join Kylie and her family at this year’s virtual event and move, shake, raise much-needed funds—and say “thank you” in a very special way. Register for free right now—it’s easy to create a team with friends and family or join one like Kylie’s. Or you can register as an individual; either way, you’ll be supporting Children’s Minnesota’s highly specialized, compassionate family-centered care.