Many of the other parents of cancer kids that I’ve met described one of the primary symptoms of their brain tumor as visual impairment. Kiara often said that she saw “flashing” or was “seeing stars.” We thought it was just from standing up too quickly, but it was actually her optic nerves dying.
If your young child says, “I can’t see,” and you’ve already seen an ophthalmologist to know his or her eyes are healthy, make an appointment with a neurosurgeon and get an MRI.
When Kiara started pre-K, she started throwing up more and more. It was a white, foamy vomit — not food or bile — and usually happened in the morning. We went to the pediatrician several times, and tried eliminating gluten and dairy from her diet. We spoke to teachers about lowering anxiety. This went on for 5 months before we knew something was dangerously wrong. Pro Tip: Get an MRI! We didn’t know that this was being caused by hydrocephalus. If you can’t get in with a specialist, go to the ER. Maybe Kiara wouldn’t be blind today if we went to the ER in December instead of waiting for the first-available neurologist appointment months later. I used to worry about going to the ER — that it would be too expensive or I’d be overreacting, but if I could go back in time I’d go the day she started throwing up the white, foamy vomit.
For years I googled “drunk walk,” “wobbles,” “poor balance,” “abnormal gait,” and was unable to find much to help determine what was wrong with Kiara. Specialists said she was fine, but in my heart I knew something was wrong. The professionals we went to were confident that it was and inner ear or vestibular problem and not cerebellar, since her symptoms were not like others that they had seen. Days before Kiara’s MRI when we learned that her brain was herniating because of a massive tumor, the neurologist mentioned a word that I hadn’t heard before — ataxia. I got in my car, grabbed my phone, googled ataxia, and felt as though Niagara Falls had opened up on me. This one word was in tons of medical journals and articles that I never accessed before. It was a terrifying word because the diagnoses associated with it were potentially fatal, but it was THE word I needed to know. It’s the reason I created this website.
Ataxia is the presence of abnormal, uncoordinated movements. It is a general term used for a dysfunction of the parts of the nervous system that coordinate movement, such as the cerebellum in the brain. An unsteady, staggering gait is described as an ataxic gait because walking is uncoordinated and appears to be ‘not ordered’. Many motor activities may be described as ataxic if they appear to others, or are perceived by patients, as uncoordinated.
Kiara never gained the strength and stability that most kids develop after they’re toddlers. She always had a drunk walk and easily lost her balance. She started seeing a chiropractor to see if alignment and symmetry could help her with stability. I thought it may have been torticollis that was throwing her off balance. A few months later, she began weekly physical therapy appointments. Later it was vision therapy for 18 months. We didn’t know that it was a brain tumor in her cerebellum.
