Who we are

“They say that a worried mom does better research than the FBI. It’s true, but moms need to know the right words to ask the right questions to get the right answers.

I spent years seeking specialists and therapists because I *knew* something was going on inside my daughter’s brain. Call it a hunch or mother’s intuition, I worried and researched and somehow still missed the 5.5cm brain tumor that almost took her life.

I want to help other moms, dads, grandmas, teachers, and loved ones save those precious moments and get the help they need.”

~ Robyn Sandoval, Kiara’s Mom

Kiara's story

From the time Kiara began walking as a toddler, she had a “drunk walk.” She had years of physical, occupational, and vision therapies, and experts were confident that the problem was inner ear/ vestibular/ balance. Other than her wobbles, she was a healthy, normal little girl.

When Kiara began pre-K in the fall of 2014, she started having nausea in the morning. Her parents investigated if it was anxiety or diet, but there was no clear cause. Within a few months, her nausea was more frequent and she was stumbling more often when walking. By March 2015 Kiara was unable to walk unassisted. Her neurologist feared that it was the childhood version of Lou Gehrig’s disease.

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 year-long round of chemotherapy infusions. She receives chemo every Thursday at the Children’s Blood and Cancer Center. Our prayer is that the chemo will kill any residual tumor and Kiara can put this nightmare behind her. Jesus, we trust in You.

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.

Her signature pink glasses are not for vision, rather they protect her eyes from geting injured during a typical day in the life of a wobbly, visually impaired girl. She has battled brain cancer and vision loss with the heart of a soldier, so tactical glasses are perfect for her. Plus, she fits in with all of her prayer warriors in A Girl & A Gun Women’s Shooting League.

Through it all, Kiara has remained a happy and loving little girl. She has an amazing sense of humor and is a good friend. She is a blessing in our lives.

Journey in Photos

Looking back from now to the beginning. We’ve had lots of tears and lots of laughs.

White Cane

Kiara is going weekly for chemotherapy treatments and her MRI…

Shunt

Kiara's vision continued to worsen, so the hypothesis was that…

Chemo

Kiara had another surgery to implant a port into her…

Recurrence

Kiara had been getting MRIs every three months and radiology…

Living with Vision Loss

Kiara's vision gradually worsened and she struggled in school, but…

ICP Monitor

Kiara's brain ventricles are large and it is impossible to…

Vision Loss

Her brain was healing and she was eventually able to…

Steroids

Kiara continued to heal and we were finally able to…

Walking

Kiara had been unable to walk for a month, so…

Relearning Everything

When she finally became responsive, the work began to teach…

Post Op

I was not prepared for how Kiara would look after…

D Day

On a Thursday morning went to an imaging center for…

Weight Loss

By her 5th birthday, Kiara could barely stand on her…

Nausea

When Kiara started pre-K, she started throwing up more and…

Neurologist

Kiara's drunk walk (ataxia) never got better and we suspected…

Wobbles

Kiara began walking, but never gained the strength and stability…

First Hospitalization

When she was 7 months old, Kiara gave us our first…

Perfect Baby

This beautiful baby surprised us five weeks early, but her…