Silas was 7 when his family’s world shifted for the second time in as many years. His baby sister, Zuri, turned 1 already having endured multiple surgeries to address spina bifida and other rare, interconnected medical challenges collectively called VACTERL association. You can read Zuri’s story here. At a time when his family was still regularly stationed at Zuri's bedside in the Pediatric Intensive Care Unit (PICU) at Children’s Hospital of Philadelphia (CHOP), Silas – Philadelphia Eagles superfan, tall for his age, and a sports statistician in the making – first saw an endocrinologist for precocious puberty. Part of the standard protocol for this diagnosis is to do a brain MRI.

What the MRI revealed was anything but routine: Silas had a brain tumor lodged in an area that was critical and largely inoperable. It touched multiple structures, including his optic nerve.

“To get Silas’s diagnosis, on top of what was happening with Zuri, was just unthinkable,” Meredith says. “We saw no signs. He’s smarter than smart, and had no memory issues, no gait issues.” 

Within days, Silas had entered CHOP’s PICU, on the same floor where Zuri had been fighting for her life the previous year.

CHOP neurosurgeon Phillip B. Storm, MD, performed a brain biopsy and a ventricle opening to relieve pressure on his brain. The biopsy showed a hypothalamic optic pathway glioma – a rare, slow-growing brain tumor in the hypothalamus, which is responsible for essential bodily functions such as regulating hormones, body temperature and appetite. Symptoms often include vision problems, headaches, and endocrine issues like altered growth or hormonal imbalances. 

Neuro-oncologist Jean B. Belasco, MD, oversaw Silas’s treatment plan: 10 weeks of intensive chemotherapy followed by eight cycles of four weeks on chemo, two weeks off. Through it all, Silas never lost a single strand of his famously thick head of hair. The tumor didn’t shrink, but chemo relieved some of the pressure it caused. His vision, earlier compromised by pressure on his optic nerve, returned to normal.

As they experienced with Zuri, Meredith and her husband, David, were amazed at the attention to detail and collaborative approach of Silas’s CHOP team. Dr. Storm brought Silas’s case to a multidisciplinary tumor board – an initiative where specialists across disciplines consult on complex cases. They discussed the strategy for a tumor biopsy; because of its location, trying to access it may have caused memory loss. After meeting with the board, Dr. Storm and his team targeted a small section of the tumor that touched the frontal lobe – a safe point of access that allowed them to analyze the biopsied material and determine the best course of treatment.

“Many brains coming together to solve things,” Meredith says. “It was amazing.”

Silas understood more than most eight-year-olds about what was happening to him. He asked hard questions. He faced painful weekly port accesses. He missed school. And still, he handled it “incredibly well,” Meredith says – buoyed by math, Legos, and, most of all, his love for the Eagles.

While some hypothalamic gliomas can be surgically removed, the location of Silas’s tumor makes it inoperable, and he will need routine scans and regular monitoring to make sure it does not start growing again, which may cause additional complications and would require further treatment. 

Silas finishes his 60-week chemotherapy journey shortly before he and one of his younger brothers, Odin, attend an Eagles game as honored guests. He tells Meredith it feels “like my personal celebration.” For Meredith, it’s a reminder of how far the entire family has come, and the strength they’ve found in the CHOP community of clinicians, caregivers and families traveling their own difficult roads.

“With the support of CHOP, you feel hope and possibility,” Meredith says. “Even living in the PICU. You go day by day, breathe through it. And hope for tomorrow, because you’re in the best hands.”