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Alexandra - parent of Joseph, living with pLGG

“It has been an overwhelming and highly frustrating diagnosis, and we very much appreciate rethinkpLGG.”

Everyone’s experience with pLGG is unique and will vary from individual to individual.

Sally

Parent of Austin, a child living with pLGG

Austin was diagnosed with an optic pathway glioma in January 2023, when he was 10 months old. He was having nystagmus in both eyes when we took him to the ophthalmologist. The ophthalmologist told us there was swelling on the optic nerve and sent us straight to the emergency room. He had a CT scan that showed a mass, and then had an MRI for a diagnosis.

The tumor is in his chiasm area. The doctors don’t want to do a biopsy yet, so they diagnosed it based on an MRI alone. We don’t know which mutation is involved, and we can’t be completely certain what the tumor even is, but we are trusting the doctors.

Photo of Austin | personal story thumbnail

Exploring Every Option

Austin started chemo immediately. He tolerates the chemo pretty well, all things considered. We have also started feeding him a mostly plant-based diet and adding all sorts of fiber to his diet to combat some of the side effects of his chemotherapy. I’m always researching what else we can do in a more natural way to keep him healthy.

We know this will be a long journey – the tumor has remained stable so far, but we do know these tumors tend to grow on and off throughout childhood and that his tumor is inoperable. We also know he can see, but we don’t really know how much the tumor has impacted his vision since he’s a baby. He does see the ophthalmologist every 3 months. His speech is also a bit delayed, but we aren’t sure if that’s the tumor or not.

I think the diagnosis went from terrifying the day the mass was found to a calmer place when the doctors said it was “benign” and that some tumors respond well to chemotherapy, and then back to a terrifying place once I started doing my own research.

Certain tumors are so unpredictable, and there is so little research on them. A lot of research includes a diagnosis of NF1, which Austin doesn’t have.

It has been an overwhelming and highly frustrating diagnosis, and we very much appreciate rethinkpLGG and the information on the website about low-grade gliomas.