At age 5, Tori was diagnosed with a standard risk medulloblastoma (December 1999). She immediately had surgery as she had significant hydrocephalus. The surgery technically went well as she had a gross total resection, however, the surgery resulted in a complication called posterior fossa syndrome with cerebellar mutism. She came out of surgery blind, mute, unable to swallow, paralyzed in both arms and right leg, and very irritable. During extensive rehabilitation, she also had 6 weeks of radiation and a year of chemotherapy.
Now when looking at her it is hard to tell all she went through. She loves to swim and ice skate. She is a Girl Scout and participates in all the events. She is happy, funny and active. We never will truly leave the brain tumor experience behind us as Tori now is thyroid and growth hormone deficient. She takes medicine everyday. She also has a shunt. The bottom line is life is manageable and good.
As her mom, this experience has changed me completely. I don't take things for granted; I have joy in each day; and I have a purpose in helping others along this pediatric brain tumor path.
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