Abby’s health journey began on September 8th, 2021. We were in the car driving back from Florida after being evacuated for Hurricane Ida. Abby was concerned because she lost some of her vision in her left eye while we were driving in the car. We pulled over and did a check and decided to head to the nearest Emergency room as something was off. We ended up at Studer Family Children’s hospital in Pensacola. They decided to do a CT scan of her head and found some abnormalities. After speaking with the neurosurgeon they decided to admit Abby for the night and for her to have an MRI of her brain. They found 3 lesions in her brain. Abby was stable and her vision was normal again so they released her the next day to follow up with her pediatrician and get a referral to a neurologist when we get home. Once we were home and followed up with our pediatrician Abby experienced another temporary vision loss but this time in both eyes. We went to the ER at Children’s in New Orleans and she was admitted with a repeat MRI. The next day we met with her team of doctors and they presented the case that Abby has a brain tumor. At that point our best bet for a formal diagnosis would be a biopsy. They performed the biopsy on the 17th of September but her biopsy results were inconclusive.
We also found out that Abby has partial visual loss in her left (top left corner) eye and a little in her right eye (top left corner). The doctors believe that it is from the biggest tumor that is putting pressure on her optic chasm. The location of Abby’s tumors make them inoperable.
After the inconclusive biopsy results we reached out for 2nd and 3rd opinions and ultimately ended up at St Jude. St Jude recommended another biopsy so we can get a formal diagnosis for treatment purposes. Abby had her 2nd biopsy in Memphis this past November and we now have her formal diagnosis.
Abby has multi focal low grade pilocytic astrocytoma. We recently found out her tumor tested positive for a BRAF V600e mutation.
Abby began treatment on January 25th 2022 with an inhibitor oral chemo medication called Dabrafenib. She will be on the medication for 2 years.
We are asking for prayers for our girl as she embarks on this new journey.
