Honored Kid

Ruari B.

Age 8
Ruari B. Kid Photo


Union Springs, NY, US


Brain or spinal cord tumor

Date of Diagnosis

September 2020


No evidence of disease

Treated At

Golisano Children's Hospital, Syracuse

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My Story

Ruari's cancer journey began in the late summer of 2019, although we didn't know it then. Ruari had dizzy spells and some vomiting in August of 2019. We took her to the pediatrician and had an EEG to rule out seizure activity. Everything appeared normal. When another episode happened and my mom/nurse brain felt uneasy, we got a referral to Pediatric Neurology. She was seen by a different tertiary care center in January of 2020 and diagnosed with benign paroxysmal vertigo of childhood. As explained by that neurologist, an uncommon migraine variant. So when the headaches started in Spring of 2020, we chalked it up to that diagnosis. Her PreK teacher noticed something funny with her eyes...COVID happened...then we noticed something funny with her eyes. We requested an appointment to see a pediatric ophthalmologist in July of 2020...that appointment finally happened Friday, September 18th, 2020. The ophthalmologist saw swelling around Ruari's optic nerves, papilledema, and sent us immediately to Upstate Golisano Children's Hospital for a MRI of her brain to find the cause of the swelling. September 19th, 2020 we learned that our 4 year old had a racquetball size tumor in her 4th ventricle at the base of her brain. This finding earned us an immediate transfer to the PICU for closer observation as the tumor was pressing on her cerebellum and brain stem, which meant she would be stable until she was not. It had also caused hydrocephalus. We were then informed that the on-call neurosurgeon would be seeing us Sunday morning and that his schedule had been cleared for her surgery on Monday, September 21, 2020, the day before her 5th birthday. After 10 hours of surgery, we met with Ruari's neurosurgeon. He felt he was able to remove the entire tumor and that the brain tissue around the tumor looked healthy. Our next steps would be dependent on the pathology report and follow up MRI of her neck and entire spinal cord to make sure there was no other tumors. Wednesday, September 23, 2020 we learned Ruari's tumor was a pilocystic astrocytoma and that the MRI of her neck and spine were clear. The tumor had been completely resected, and treatment for these types of tumors is resection alone at this time. Our tutu loving, sparkly girl is going to be okay. But her story is not finished...she will have follow up MRI's every 3-4 months to make sure the tumor is not regrowing. She will be a part of the brain tumor clinic at the Center for Children's Cancer and Blood Disorders at Upstate Cancer Center in Syracuse, NY. She will have follow up appointments with her neurosurgeon, pediatric oncologist and pediatric ophthalmologist every couple months and continue to wear a patch over her left eye to help strengthen her right eye due to the questionable cranial nerve damage from the pressure of the tumor. Our last MRI was December 21st, 2020, it showed complete resection, no regrowth, and that her ventricles had returned to normal size; thus removing the fear of a possible shunt to drain her cerebral spinal fluid from around her brain. We will forever walk in the world of a post-cancer diagnosis...and do everything we can to help kids everywhere fight. #tutustrong #SpreadingRuari'sSparkle

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