At just 3 years old, Waylon was diagnosed with medulloblastoma, a fast-growing type of childhood brain tumor. His brave journey — from emergency brain surgery to radiation and chemotherapy — shows the incredible resilience of kids with cancer and highlights why childhood cancer research through St. Baldrick’s is so vital.
A Sudden Change: From “Just the Flu” to a Brain Tumor Diagnosis
In December 2024, Waylon’s older brother, Arlyn, came down with flu-like symptoms. When Waylon developed the same issues — vomiting and fatigue — his family assumed it was a virus. But while Arlyn recovered, Waylon grew worse.
Between early December and January 2025, Waylon saw eight medical providers, including urgent care, his pediatrician, and an eye doctor. Despite persistent vomiting and occasional imbalance, no one suspected a brain tumor.
Everything changed during a routine visit to Emer Eye Care in Kenosha. When Waylon tagged along for his brother’s appointment, his mom requested a quick eye check. The clinic offered an optional fundus scan — a test not covered by insurance — and that small decision may have saved his life.
Dr. Emer spotted something alarming and immediately forwarded the results to Children’s Hospital of Wisconsin. Within hours, Waylon was rushed to Milwaukee, where a CT scan revealed a large posterior fossa tumor at the base of his brain.
Emergency Surgery and a Battle No Child Should Face
The next day, Waylon underwent an emergency procedure to place an external ventricular drain (EVD) to relieve pressure caused by a blocked flow of cerebrospinal fluid.
On February 10, 2025, he underwent major brain surgery to remove the tumor — roughly the size of a ping-pong ball. Although the surgery was expected to last up to 12 hours, doctors successfully removed the entire tumor in just over six.
After surgery, Waylon faced new challenges:
- Right-leg weakness
- Low sodium levels
- Difficulty with coordination
- Five days in the ICU
- Intensive physical and occupational therapy
After 19 days in the hospital, he was discharged — only to be readmitted four days later for additional procedures, including a spinal tap and port placement.
Treatment for Medulloblastoma: Radiation, Chemotherapy, and Endless Courage
On March 17, 2025, Waylon began six weeks of daily proton radiation therapy at Northwestern Medicine Proton Center, paired with weekly chemotherapy at Central DuPage Hospital. Radiation finished on April 30, 2025, and he soon began a year-long chemotherapy protocol at the MACC Fund Center at Children’s Hospital of Wisconsin.
His treatment plan includes:
- 2 brain surgeries
- 1 port placement surgery
- 1 experimental fertility preservation surgery
- 3 sedated spinal taps
- 30 rounds of radiation
- 9 rounds of chemotherapy (ongoing)
- Dozens of MRIs, blood draws, and ongoing therapies
Waylon has faced side effects including neuropathy, nausea, fatigue, dizziness, and muscle loss. His treatment has forced him to miss milestones — like his first day of 4K, his first school field trip, and family trips up north.
Waylon’s Strength: A Bright Spirit in Dark Moments
Despite everything, Waylon remains full of life. His family describes him as funny, clever, and compassionate — a little boy who loves wheels, tools, monster trucks, tractors, and “racing” in his power wheels. He also loves cuddling with his therapy dog, Maple, and eating his beloved “toast sandwiches” (just toast with butter!).
His goals are simple but meaningful:
- To walk and run without falling.
- To get stronger.
- To return to school with his friends.
Through this journey, his family has discovered just how strong he truly is.
Why Pediatric Cancer Research Matters
For Waylon’s family, childhood cancer research is deeply personal.
“No child should have to suffer like Waylon has suffered,” his mom shared. “The uncertainty and crushing news devastate a family more than words can express.”
They’ve learned firsthand the power of strong support systems, scientific advances, and a community that refuses to give up.
“Kids are so strong,” she said. “The guilt and grief are constant, and some days it shows more than others. But we take things day by day.”
Hopes for the Future
“I hope one day he can look back and see how many people he inspired with his strength and smile,” his mom said. “More than anything, I just want him to have the chance to be a kid again — to play, dream big, and live a life filled with laughter and love.”
Waylon’s story — from flu-like symptoms to a lifesaving eye scan and months of treatment — underscores how urgently we need better, safer treatments for children with brain tumors.
Your donation to St. Baldrick’s fuels the most promising research to find safer, more effective treatments for kids with cancer. Give hope today.
