Childhood Cancer Heroes

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Sebastian Nienke

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Sebastian is an avid video gamer who loves animals. He is kind, smart, creative and likes to have fun.

At 7 years old, Sebastian was experiencing headaches and throwing up. His doctors thought he might have allergies, but his mom, Jeannette, took him into urgent care just in case. After a CT scan, doctors found cancer in his brain. They were told to go to Children’s Mercy Hospital of Kansas City that day.

Sebastian underwent a tumor resection and radiation treatment for ependymoma. Today, he is in remission, but still has yearly MRIs. He is the strongest person Jeannette knows, and she is a survivor of breast cancer. From her experience and research, she confidently says that any kid that can survive brain cancer as long as Sebastian has, is a miracle and a hero.

Jeannette wants others who may be facing a childhood cancer diagnosis to know that they are not alone. There are many people out there who can help with emotional and financial support. She was amazed at all those who came together for Sebastian. The journey is hard, but having hope and asking lots of questions got them through it.

Jeannette also has hopes that there are better and less invasive treatments for children in the future. Through Alex’s Lemonade Stand Foundation (ALSF), she thinks this can be done, and, ultimately, a cure can be found. She and her family have volunteered at grocery stores to help raise money for ALSF to make this happen.

One of Sebastian’s favorite memories is when he got to meet players from the Kansas City Royals through ALSF. It helped boost his spirit and was unforgettable.

Hero quote: "My head hurt all the time back then but it's all over with and now I'm glad it's done!" - Sebastian

Information provided by Jeannette Nienke, Sebastian’s mom
Updated January 2021

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