Waylon’s StoryIn early December 2024, Waylon’s older brother, Arlyn, came down with what seemed like a typical flu—two weeks of vomiting and fatigue. When Waylon began showing similar symptoms just before Christmas, it appeared to be the same illness. But unlike Arlyn, Waylon didn’t recover.By early January 2025, his lingering symptoms led to an urgent care visit. Over the next six weeks, Waylon saw eight different medical providers—urgent care doctors, his primary care physician, and even an eye doctor. Despite weeks of off-and-on vomiting, and brief moments of imbalance, nothing conclusive was found. Eventually, his pediatrician referred him to a GI specialist.Around that time, Arlyn was also having trouble with his vision, so the family scheduled an eye exam at Emer Eye Care in Kenosha. Since Waylon would be tagging along, his mom asked if his eyes could be checked, too. The clinic agreed—and offered an optional fundus scan, a specialized test not covered by insurance. That decision may have saved Waylon’s life.Dr. Emer saw something troubling in the scan and immediately sent the results to Children’s Hospital of Wisconsin. Within hours, the family received urgent instructions: get Waylon to Milwaukee immediately.At the ER, he underwent a neurological exam and a precautionary CT scan—thanks to the concerns raised by the eye scan. The results were devastating: a large tumor was found in Waylon’s posterior fossa, the area at the base of the brain. He was admitted immediately.The next day, surgeons placed an external ventricular drain (EVD) to relieve dangerous pressure caused by a blockage in his cerebrospinal fluid. Over the following week, Waylon endured MRIs, testing, and consultations, with doctors preparing the family for worst-case outcomes: partial tumor removal, paralysis, loss of mobility, and more.On February 10th, Waylon underwent major brain surgery to remove a tumor roughly the size of a ping pong ball. What was expected to be an 8–12 hour procedure took just over six—and doctors were able to remove the entire tumor.After surgery, Waylon faced new challenges: critically low sodium levels, right leg weakness, and coordination issues. He spent five days in the ICU before moving to the neurology floor to begin intensive physical and occupational therapy. His EVD was successfully removed, and after 19 days in the hospital, he was finally discharged.Just four days later, his incision began leaking cerebrospinal fluid. The family rushed back to Milwaukee. After 11 long hours in the ER, Waylon was treated and stabilized. The very next day, on February 24th, he returned to Children’s for another procedure: a spinal tap to check for cancer spread and placement of a chemo port.On March 17th, Waylon began proton radiation therapy at Northwestern Medicine Proton Center. For six weeks, he underwent daily treatments, along with weekly Vincristine chemotherapy at Central DuPage Hospital. After the first chemo dose, his balance and coordination worsened—side effects that continued throughout the six-week course.On April 30th, Waylon completed radiation. His therapies continue—weekly physical therapy and monthly (or more frequent) occupational therapy to support his long-term recovery.After a short break to allow his body to recover, Waylon began his next chapter on June 3rd: roughly a year-long chemotherapy protocol at the MACC Fund Center at Children’s Hospital in Milwaukee.Chemotherapy Plan (ACNS0331 Protocol – Standard-Risk Medulloblastoma)Waylon will undergo nine rounds of chemotherapy, alternating between two types of cycles:• Cycle A (6 weeks):Inpatient admission on Day 1 for Cisplatin, Vincristine, and Lomustine.Outpatient chemo on Days 8 and 15. Additional visits and labs as needed.• Cycle B (4 weeks):Two-night admission for Cytoxan and Vincristine.Outpatient follow-up on Day 8. Labs and clinic visits based on his condition.The full course follows this pattern: A, A, B, A, A, B, A, A, B—lasting nearly a full year.Throughout this intensive treatment, Waylon is expected to face serious side effects, including:• Severe nausea and vomiting• Extreme fatigue• Immune system suppression, increasing his risk of infections• Dizziness and balance issues• Pain in his legs and extremities, often limiting mobilityHe will also undergo:• MRIs every 12 weeks to monitor for recurrence• Hearing tests before each chemo cycle• Blood draws twice weekly• Ongoing physical and occupational therapy to preserve strength and function Waylon’s journey—from flu-like symptoms to a life-saving eye scan, emergency brain surgery, and a year-long battle with cancer—is a powerful story of early intervention, medical expertise, and unwavering strength. Despite the physical toll, Waylon continues to fight with resilience far beyond his years. His path ahead remains long and uncertain, but he is surrounded by love, hope, and a community that believes in his recovery.