Kiara lost her eyesight as a result of the hydrocephalus caused by the tumor. Initially thought to be temporary as part of the Posterior Fossa Syndrome, the official diagnosis came in July 2015 that it is actually permanent vision loss. She has no vision in her right eye and only very slight vision in her left eye (pinhole, no contrast/color, not very usable). Her optic nerves were severely damaged by the prolonged intracranial pressure from the tumor.
In May 2016 MRIs showed that Kiara’s residual tumor had grown, so she had another craniotomy to try to remove the tumor. During surgery, however, doctors saw that it had grown throughout her cerebellum and against her brain stem. A week later she had an endoscopic third ventriculostomy (ETV) to combat hydrocephalus. Months later she would have a fifth brain surgery to install a vp shunt.
In August 2016 Kiara began a 17-month round of chemotherapy infusions of carboplatin & vinblastine, and then just vincristine after a reaction to the carboplatin. She received chemo every Thursday at the Children’s Blood and Cancer Center. Our prayer was that the chemo would kill any residual tumor and Kiara could put this nightmare behind her.
After a year-long break of chemo, Kiara went back on treatment in June 2020. Her tumor is immunonegative for markers, but it does have BRAF duplication in 53% of the nuclei, so a BRAF inhibitor was the next step. She began Mekinist, a daily oral MEK inhibitor.