Kayla Stark, Levi’s mother, knew that something wasn’t right with her son. “He just wasn’t acting like himself. We were on vacation last year and he just slept the whole time, and his legs would continue to look extremely red as if they were sunburned. He had also started vomiting here and there. His pediatrician wasn’t concerned and said to just keep an eye on him, and I literally had an ER doctor laugh in my face before discharging him with a virus.”
Levi’s journey started in June 2021. He was admitted to the hospital on June 16 for testing as his mother had brought him back to the pediatrician insisting something was wrong. On the second night in the hospital, he began having seizures. After rushing him back for a CT scan, they were moved into the ICU and were told that Levi had a brain tumor. By then, the seizures had progressed so badly that Levi needed to be intubated and was airlifted by helicopter to a nearby Children’s Hospital. When they arrived, they were told that Levi had Hydrocephalus and they were going to take him into emergency surgery to insert a drain to alleviate the pressure due to excess fluid. They had a plan to go in for a longer surgery to remove the tumor in five days.
Kayla said, “Our faith was the only thing that got us through it. We had just found our church family mere months before this happened. We were surrounded with so much support and prayer throughout Levi’s treatment.” GOD was watching over him. His surgery was scheduled to be 12 hours with a possible second surgery to finish. But after only five hours of operating, they were called and told the surgery had finished and all the tumor was removed.
Afterward, they found out that Levi’s specific tumor, Grade 3 Anaplastic ependymoma, usually spreads within the nervous system but his was just one large tumor. He did not need chemotherapy after surgery due to the single location and complete removal of the tumor. Proton radiation therapy was required every day for six weeks (Monday through Friday) after they were released from the hospital six weeks later. They found a wonderful organization, Project Joy and Hope, where they participated in their Tulip Project and were able to stay in Houston throughout his radiation treatments. Kayla said, “Levi would get tired easily, but would still play the rest of the day after his treatment.” In fact, for his second birthday, they held a fundraiser for Project Joy and Hope and donated over $13,000!
“Now he’s just acting like a regular 2-year-old. He likes to swim, play t-ball, follow his big sister around, and just loves being outside.” His parents both said “watching him go through it all at such a young age was excruciating. There was just so much he didn’t understand. Also, trying to explain it to his older sister, who is six years old, was so hard. During this time, June through September, she stayed with family members and only saw us here and there.” But they both said the experience has taught them “to make time for family. Make the time to do the things together that you can.”
Levi is the nephew of Windy Stark, who is a Pharmacy Technician at Onco360. Watching his journey, led Windy here. She said, “it hit close to home. I wanted to be able to help other families touched by cancer in any way that I could. I have been in the pharmacy now for 13 years, but I thought, what better way to help than by doing something I know and love at the same time. I even shed tears with some families when scheduling deliveries because they touch my heart.”