Abby is a sweet, empathetic, two-year-old with a smile that is contagious. As a baby, her parents noticed that she was struggling with basic things like some motor function and swallowing in her early months. They continually requested a consultation with a Neurologist, but they were unable to get one until Abby was 15 months. When doctors realized that these challenges could be stemming from a tumor, they scheduled Abby for an MRI which showed a tumor in the medulla portion of Abby’s brain stem. She quickly scheduled for an open brian biopsy the following week, right before Christmas. This biopsy was inconclusive, leaving the Brown family in the frustrating ‘wait and see’ situation where doctors monitor the tumor to assess how quickly it grows. With every scan, Abby’s tumor continued to grow, and the symptoms (left sided weakness, swallowing deficits, obvious discomfort) became more apparent.
After six months of waiting, doctors did a second open brain biopsy in June of 2022. Abby was then officially diagnosed with grade 1 ganglioglioma, a low-grade-glioma with b-raf mutation. Because this type of tumor is inoperable, Abby began a two-year treatment plan consisting of daily, oral chemo to stop the growth and, hopefully, shrink the tumor.
Trying to administer oral chemo, twice daily, on a very specific schedule to a two year old is no easy feat. The side effects of the treatments include fatigue, skin rashes, nausea and decreased appetite. Abby’s tumor also causes left sided weakness affecting core and walking, but Abby doesn’t let any of this keep her spirits down. She is a sweet, chatty little girl, who is highly empathetic and so excited to be a big sister… She is truly a light and a fighter. While Abby's family is hopeful that the treatment will help to shrink the tumor, they know that this will likely be an ongoing journey for many years to come as it is unsafe to remove the tumor due to it’s location... There needs to be better treatment options for kids like Abby who will inevitably be on treatments for a substantial amount of time so that she doesn't have to deal with so many of the long-term side effects that come with current treatment options for these kids.