Lily’s Story: Finding the Fun, Even in the Hardest of Times

It was Thanksgiving and the start of a journey Brittany and Cameron never would have imagined. When 18-month-old Lily Jackowiak didn’t respond to a course of antibiotics, it was the first clue for her parents that something just wasn’t right with their only child. And then, when she developed unexplained bruises on her legs and became extremely lethargic, that’s when they knew something was really wrong. Taking the advice of her pediatrician, Cameron and Brittany rushed their baby girl to Children’s Hospital & Medical Center in Omaha, where they received an unthinkable diagnosis: Lily had leukemia.

“I couldn’t even wrap my head around it. I never in a million years expected anything like this,” said Cameron. “Lots of things started happening right away so it was good to have that constant stream of people that first night, getting things rolling, because it kept my mind on something other than the devastating news.”

The expert oncology team at Children’s wasted no time in getting treatment started for Lily. Within the first 24 hours, she received several infusions of blood and platelets, followed by surgery to get her PICC line placed where she would start receiving all her medicines.

It was December 2019 and the beginning of a cancer journey that would take the Jackowiak family on a series of twists and turns.

After spending the holidays in the hospital, Lily was discharged but would be readmitted within 24 hours on New Year’s Day with a diagnosis of respiratory syncytial virus (RSV). Children’s team decided to keep her in the hospital for her induction phase, the period cancer patients go through before receiving chemotherapy and radiation. Going to the doctor was never a favorite experience for Lily, but thanks to the specialized care she received at Children’s, she became more comfortable in the hospital setting.

“The team did such a great job of explaining to Lily what was happening to her – to the point that she loves to play doctor now. She even likes to tell her doctors how to do their jobs…look in my ears first, not my mouth, she will tell them,” Brittany said with a chuckle.

Lily moved from induction to the next course of treatment in early 2020, and then spent the rest of 2020 and now, into 2021, going through multiple treatment phases. For two phases of her treatment, Lily was part of a trial study called the “blended study,” where she would wear a special backpack– a slow drip form of chemotherapy designed to help kids from relapsing. One of the first children in Nebraska to be part of this new study, Lily has worn the backpack twice as part of her care plan. The family even managed to have a little fun with it, gluing big googly eyes on it before Lily’s appointments.

Keeping that element of fun constant throughout Lily’s leukemia battle has been important to Cameron and Brittany. They would all three show up for Lily’s appointments with matching t-shirts and masks during the pandemic. And they integrated “theme days” into their routines, centered around tie-dye, Disney, dinosaurs, Baby Shark and Daniel Tiger. These distractions helped the Jackowiaks keep focused on something other than spinal taps and infusions.

In October of 2020, Lily entered the maintenance stage of treatment. Cameron and Brittany breathed a sigh of relief. But on Jan. 1, 2021, Lily developed a limp to the point where she could not walk. Doctors determined Lily had osteopenia, a condition that sometimes occurs as a result of chemotherapy and steroids. In February of that same year, she woke up with stress fractures in her feet and ended up having to wear a tiny pink cast to correct it – the perfect color for a little girl full of sweetness and sass.

After numerous trips to the ER, months in the hospital and several ups and towns, Lily’s family can finally see a light at the end of the tunnel. Today, Lily is 3 years old and started preschool this fall. An opinionated little lady, she loves being a kid. The whole family looks forward to the end of her treatment in February of 2022.

As for Cameron and Brittany, they feel blessed to be surrounded by the team at Children’s throughout this journey. “Everyone here has opened our eyes about how much they truly care about their patients and the families. I honestly don’t know what we would do without them—from Dr. Ford, our main oncologist to Jenilee Vogel, our nurse practitioner, who has been there through so much with us and answered every question. The nursing staff, the infusion staff and the clinic staff, they’re all wonderful people; we could not have done this without them. They all have a special place in their hearts for these kids.”


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