Beth's Story

by Bethany
(Cincinnati, Ohio)

My daughter Olivia has a rare form of masses that gives a high alarm for a possible brain tumor. She has multiple sacs inside the pineal gland and she also has “cyst areas” scattered throughout her frontal and occipital lobes. The spread itself is consistent with a brain tumor because a cyst doesn’t spread.

How did I find out that Olivia had the cyst? Olivia has severe speech and emotional problems, and I have been trying to get an answers why. Her head circumference is in the 99% of her age group so they sent her off for a MRI of the brain to see if there was possible fluid buildup around her brain. Then I got the call from the doctor that I needed to set up an appointment with a neurosurgeon and a neurologist. Some tests I've encountered are an ophthalmologist to check for brain swelling, endocrinologist consults to check for early puberty, multiple MRIs with sedation of the brain and spine, and a psychologist for Olivia and I to see how we are dealing with the situation.

We still have to go through tri-monthly MRI for the first year to watch for growth. The doctors still have no determinations whether it is a brain tumor or a cyst because we are still pretty early in the evaluation. They do not want to biopsy the mass because of the location and the risk of possible brain trauma. So we have to watch and see.