On Thursday, April 9, 2015, Kiara had an MRI that revealed a massive 5.5 cm tumor that took up almost all of her cerebellum, the part of the brain responsible for movement. She had intense hydrocephalus, so she was rushed immediately to the Children’s Hospital into emergency surgery to insert an EVD to relieve the pressure and keep her brain from herniating. The tumor looked like a medulloblastoma, an aggressive brain cancer that would only give Kiara 6 months to live. Her little body was given steroids for 3 days to prepare for surgery to remove the tumor.

A team of pediatric neurosurgeons worked on Kiara’s brain for over 8 hours on Monday, April 13, 2015, to remove the massive tumor. They were able to resect almost all of it, including the part attached to her brain stem. The pathology of the tumor was determined to be a Grade 1 juvenile pilocytic astrocytoma (JPA).

Following surgery Kiara had Posterior Fossa Syndrome, which required occupational therapy and physical therapy treatments to help her relearn how to swallow, speak, smile, and walk again.

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.

Kiara had to change schools so that she could get the IEP and accommodations that she desperately needs for learning. She is learning braille and receiving instruction on how to use assistive technology and a white cane, along with OT and PT.

Through it all, Kiara has remained a happy and loving little girl. She continues to grow into a smart and sassy teen!

She has an amazing sense of humor and is a good friend. She is a blessing in our lives.