Liesel's Story

I remember the day perfectly, January 28th, my mom’s birthday. Liesel had been up through the night with a difficult cough, sleeping in the family room with my wife Courtney right by her side.

The next morning brought a trip to the pediatrician for what we believed would be a routine cold or possible pneumonia. I was between work appointments sitting in a parking lot when Courtney called to say they were on their way to Children’s Mercy Hospital, an X-ray had revealed no air in Liesel's left lung.

I met them in the ER. While Liesel sat on her phone, Courtney and I waited, anxious to learn what was happening. An MRI soon revealed a massive tumor extending from her shoulder almost to her waist, collapsing her lung and moving her heart. It was cancer, Ewing’s Sarcoma.

The word cancer came in a way no parent can ever prepare for. The severity of those early days was overwhelming as her airway began closing.

What followed was a daunting, highly complex treatment plan under the Children’s Oncology Group protocol: 14 rounds of chemotherapy requiring 70 individual medication doses, frequent blood transfusions, constant white cell count checks, and sudden fevers that rushed us straight back to the hospital. Liesel was seldom home for more than a few days at a time.

From chemotherapy, we spent eight weeks of summer living at a Ronald McDonald House in Jacksonville, Florida, so she could receive proton and photon radiation. Being away from her home, her friends, her cousins, her dad and brother, and her dog Daisy was immensely hard on a 13-year-old. But we did everything we could to keep that spark going, from horseback riding on the beach to Billie Eilish concert tickets giving her moments to look forward to so she could not just survive, but truly thrive.

Through it all, Courtney and I did everything we could to stay strong for Liesel and her brother, Will, while managing a drastic loss of income. Courtney had to leave her job to stay at Liesel's bedside, and our savings quickly depleted.

It is a vulnerable thing to ask for help as a parent. I work, I have insurance, but we needed help. That is when a quiet call from a friend introduced us to the Supporting Kids Foundation. SKF knew the financial strain of childhood cancer because they had walked beside so many families before ours. They immediately stepped in and quietly took care of our mortgage and car payments for several months. Their help gave us the freedom to spend those critical moments right by Liesel’s side to be present instead of working extra shifts to cover rising bills.

Liesel passed away in June of 2021. She was beautiful in every possible way her life was full of artful color, singing, laughter, and an extraordinary spirit that embraced life even when the doctors said her time was short. She loved big on everyone she knew.

I will cherish every single second I spent by her side, though I never realized that time would be so finite. SKF created such a profound impact on her journey and mine.

Today, I carry forward Liesel's legacy by supporting SKF and standing beside other parents who find themselves in that hospital room, praying for just a little more time.