Lydia’s Legacy
Lydia Quinn Sharpe, born on March 26, 2016, was the youngest of Tara and Jonathan Sharpe’s three daughters. She was soft-spoken, thoughtful, and extremely considerate. Of all her sisters, she was the most willing to compromise so that other members of her family were happy. Tara and Jonathan referred to her as their “go along, get along” girl. What she wanted most was simply to be with her family. If you were going somewhere, Lydia would drop whatever she was doing just to join you.
As a young toddler, Lydia was mesmerized by watching planes move across the sky, gazing in wonder at the contrails they left streaking behind them. After visiting the U.S. Space and Rocket Center in Huntsville, AL, she proclaimed at a young age that when she grew up, she would be a pilot and then an astronaut. In addition to spotting planes and stars in the sky, her favorite activities included dancing, playing with her sisters, and helping her mommy with any projects around the house.
In the summer of 2021, Lydia could not wait to finally attend “big kid” school like her sisters. Her seven-year-old sister, Madeline, was going into second grade, and Lydia was so excited to finally start kindergarten and join her at their elementary school. That summer, Lydia and Madeline participated in a track and field program. Tara and Jonathan were impressed with how fast she was running and how coordinated she had become.
Beginning in July 2021, shortly after her track program ended, Tara and Jonathan noticed some issues that they didn’t initially think much of. Lydia had a couple of stumbles and falls, which were rare for her. Occasionally, she complained of a belly ache, but that seemed to coincide with her older sister’s complaints, so her parents thought she might just have the same gluten intolerance as her sister and mom. One of her eyelids didn’t always blink at the same time as the other, but her father had an eyelid that would droop when he was tired, so no major alarm bells went off. These symptoms didn’t all appear at once, and each one had an easy explanation. She could have tripped on a root in the grass. She might have the same stomach issues as her mom and sister, or the same sleepy eyelid as her dad. After all, Lydia had completed a check-up just a couple of months earlier without any issues and was considered the healthiest of her family, rarely even catching a cold.
It was early August, and school was about to begin. There was excitement in the air as they shopped for back-to-school supplies and clothes. Lydia loved her new backpack. However, the weekend before the first day of kindergarten, Lydia began to lean uncontrollably and became unsteady on her feet. After a primary care visit, she was referred to the Emergency Room at East Tennessee Children’s Hospital. Concerned, her doctors ordered an MRI, which revealed a tumor in her brain stem. Lydia was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on August 7, 2021.
This news shakes you like nothing else. You are told that your child will die… and die soon. “Terminal” is a word you never imagine hearing, ever. The options of keeping our child alive longer through radiation or trials, while her quality of life suffered, did not sit well with us. Our child hated the four days she spent in the hospital. The time away from her best friend and sister, Madeline, was excruciating for her. Nonetheless, we met with a radiation oncologist. After that conversation, along with many others, and seeing Lydia’s extreme adverse reaction to steroids, we followed our gut decision—we would NOT seek treatment to extend the inevitable. If there had been any chance of surviving this deadly tumor, our decision would have been different.
Our family brought Lydia home. We lived the best seven weeks we could. In the end, our child was with us, talking and expressing her love. We could not have been more grateful for God’s many mercies. Lydia passed peacefully into the arms of her Creator on September 26, 2021. She will be forever missed.
Our Donation Story
We knew when losing Lydia that we would donate whatever we could to help another child live. We hardly thought about the tumor until it was mentioned by our oncologist. There wasn’t a moment that we even had to discuss it. Absolutely! We will donate her tumor. When we were told Lydia had just a few days of life left, my husband returned to the hospital to sign paperwork. Lydia’s brain with tumor would be, and was, donated to Lurie Children’s Hospital in Chicago. We anticipate that the tissue from her “untouched” tumor will further advance research for this terminal cancer. Perhaps one day we will have learned something new and helpful for DIPG studies.
Thank you sweet dear Lydia for your sacrifice! We love you eternally!
Lydia’s Family