Father’s Day 2012- that was when it all began. Father’s day is a day to celebrate and honor all the dads in the world, but for Kaylee Nichole Warren and her family, that day was the day she experienced her first symptom of DIPG. Kaylee woke up that day with double vision and later lost control of her eyes. Her parents brought her to the eye doctor out of concern, but the doctor reassured them that it likely wasn’t anything serious. However, the doctor decided to order an MRI just in case. Kaylee’s eyes and headaches continued to worsen, forcing them to move up the MRI. The results of the full-body MRI were grim and unexpected. The doctors found that Kaylee had a tumor, leading to her terminal diagnosis with Diffuse Intrinsic Pontine Glioma.
Diagnosis day was the day the nightmare began for Kaylee and her family. It started with a five-day hospital stay where they were told that Kaylee had 9-12 months to live and that there was nothing they could do except make the most of the time and make memories to cherish. But for Amber Price, Kaylee’s mother, giving up was not an option. She did not want to just accept the diagnosis. She wanted to fight. They got Kaylee into a promising clinical trial that seemed to be working by minimizing the tumor to where it could barely even be seen anymore, but the hope from the trial’s results were short-lived. Soon after, the tumor began to spread to the point where she had 8 tumors in her brain and thirty-seven down her spine. They were given the option to stop fighting again, but Amber still did not want to accept that. They continued to battle the disease and were able to even make it to Christmas but at the end of January, they were forced to go back to the hospital where they would spend the last 6 weeks of her life. Kaylee was only 7 years old when the tumor took over and she passed away from DIPG.
The support that Amber and her family found during this time was crucial for their survival of the journey. Amber was lucky to come across a local family that helped them immensely during this time. She also leaned on the nursing staff, particularly an incredible nurse that Kaylee felt had changed her life forever. The main thing a family needs during this time is support, and Amber is forever grateful that she was able to find that and have a group of people who stood in her corner.
Amber never lost hope for her daughter even when every doctor said this is it. She believed that Kaylee would defy the odds, that she could be the one person who would beat the disease. Even though one person suggests one decision, it doesn’t mean that it’s the one for you. The most important thing you can do is to do what is best for your child. She does not regret choosing to fight even for a second. The experiences and memories that she got to have with Kaylee during that time stay with her even today. Watching her fight taught Amber and her family so much about life and strength. Children like Kaylee who battle a terminal illness are wise beyond their years and stronger than anyone can imagine. Despite the circumstances, Kaylee always remained strong, smiling throughout it all. Every time she was asked how she was, she always said that she was good. Kaylee was the light of everyone’s lives and her toughness and courage will never be forgotten. Amber includes her daughter in everything she does and makes her a part of her everyday life to keep her memory alive. She lives her life with the strength and bravery that Kaylee showed her in order to honor her and make her proud.
