Johan has been treated twice for a recurrent ependymoma in the left parietal lobe (in the motor strip).
His tumor was discovered in August 2002 after he had 15 seizures in a 12-hour period. The 7-hour resection in October 2002 at UCLA was complete and the pathologist had a difficult time deciding the tumor type and grading. After four pathology readings (UCLA, OHSU, Johns-Hopkins, Mayo) we finally received two concurring reports - tanycytic ependymoma (a rare ependymoma variant).
Because of the success of the resection and his age at the time (5), we chose not to have him undergo radiation. Chemotherapy was not an option as ependymomas are typically chemo-resistant tumors.
A routine MRI in January 2004 revealed that the tumor was recurring adjacent to the resection bed. On January 15, Johan underwent a second 7-hour resection - again complete! - followed by six weeks of daily focal-beam radiation.
Currently, there is a small lesion in Johan's corpus callosum which is growing, albeit slowly. Because the lesion is sitting on a major blood vessel, we have decided not to pursue biopsy until/unless it gets larger and easier to target. Fortunately, he is asymptomatic and doing really well!
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