Jared’s Story: Brain Tumor Diagnosis Inspires Advocacy

Jared is an avid skateboarder who had taken a gap year between high school and college to decide on a path for his future while he worked part-time. This spring, he and his parents, Mike and Mary, began to worry when severe headaches began to take over his daily life. Within two weeks, Jared was experiencing slurred speech, loss of balance and weight loss.

“He asked me to drive him to the emergency department, and that’s when I knew it was serious,” Mike said.

Due to COVID-19 restrictions, Mike had to drop off his youngest son at their local hospital and wait in the parking lot. A scan revealed an abnormality on Jared’s brain, prompting the emergency department team to transfer Jared to another hospital for follow-up.

“It was horrible because I couldn’t be with him and even though he’s an adult, he’s our baby,” Mike said.

Oncologists determined Jared needed emergency surgery to remove the mass, which was blocking the flow of spinal fluid, causing his headaches and other symptoms. It couldn’t be immediately determined whether the mass was cancerous, however.

Days later, Jared and his family learned the tumor on the cerebellum was malignant, known as medullablastoma.

Finding Hope in a Team Approach

With this diagnosis, the family went to Lurie Children’s for the first time to meet Dr. Stewart Goldman, Division Head, Hematology, Oncology, Neuro-Oncology and Stem Cell Transplantation, and the rest of Jared’s new care team in the Brain Tumor Program. The Brain Tumor Board at Lurie Children’s is a team of pediatric healthcare experts that meets weekly to review cases and develop treatment plans for patients like Jared. The team also meets with families, giving patients and parents the chance to ask questions and fully understand the diagnosis to inform decisions.

“In our first meeting with the Lurie Children’s team, we went over his post-surgery MRI scans and decided Jared would need a second surgery to remove another section of the tumor,” Mary said.

Post-surgery, Jared began an aggressive radiation protocol followed by eight rounds of chemotherapy. “This piece of his journey is just getting started,” Mary says.

The pandemic that initially complicated Jared’s first hospital visit continues to impact his daily life, but he and his parents are extra cautious to see that it doesn’t affect his outcomes. “The virus has made everything more difficult and more concerning,” Mary says.

Advocating for Affordable Healthcare

In October, U.S. Senator Dick Durbin learned of Jared’s story as he spoke to families across Illinois about their healthcare experiences. Jared’s insurance coverage, provided by Mary’s employer, is protected by the Affordable Care Act. The Senator shared Jared’s story on the third day of the televised Supreme Court nomination hearings to demonstrate the benefits provided to pediatric patients through Affordable Care Act protections.

“Jared watched the hearing in shock,” Mary said. “He was speechless.”

“The road ahead is long and overwhelming,” Mary said. “But rather than sit around, we all felt a calling to advocate for him and for others. Being in the waiting room with Jared at Lurie Children’s and seeing parents with kids much younger than my son drives me to advocate for other families. We are all trying to channel our experience into something positive.”

“Lurie Children’s is ranked 11^th in the country for neurology,” Mike said. “Jared would not have access to this type of care if it were not for ACA, because he wouldn’t be insured. It’s been a huge benefit to us.”

This August, Jared turned 20 and celebrated with his family. As he pushes through treatment, he continues to enjoy skateboarding, riding his bike and walking the family dog.

“He’s a brave, wonderful young man and we’ve been so impressed by his fortitude,” Dr. Goldman said. “He’s shown resilience while dealing with a tumor at his age as a young, independent man. We are impressed with his skill set and bravery and expect great things for his future.”

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