Meet Kate: 2021 Family Advocacy Week Champion

Kate is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Kate and her family will discuss her health journey, Nemours/Alfred I. duPont Hospital for Children’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Kate.

When Kate was about 18 months old, her parents noticed her left eye wiggled, especially when she was tired. Her primary care provider referred Kate to an ophthalmologist that resulted in an MRI.

“It seemed to take much longer than expected as we sat in the waiting room,” says Amber, Kate’s mom.

The MRI concluded that Kate had a brain tumor and needed to go to the PICU as soon as the room was ready. In one week, Kate had a biopsy, spinal tap and port-a-cath implanted, with a treatment plan in place for her next visit.

“Those first few days were a blur with waiting for Kate’s oncologist,” says Amber. “A social worker helped us navigate the hospital and Medicaid.”

In the past 11 years, Kate has been in and out of six treatments for the juvenile pilocytic astrocytoma tumor and secondary conditions. It is a slow growing tumor pressing on her hypothalamus and pituitary glands and intertwined in her optic nerves, affecting her vision significantly. She also receives treatment for hormonal issues caused by the tumor and medication for type 2 diabetes and liver function.

Kate received counseling through a provider at school that went virtual at the onset of the COVID-19 pandemic and receives care from Nemours’ mental health services to deal with increased anxiety.

Currently, Kate is halfway through her sixth treatment and the tumor is stable and showing decreased activity. Her diabetes is well managed with medication and diet and her liver function is still high. Kate loves reading and reads braille at a second-grade level.