Anne has medullablastoma, a rare but aggressive tumor normally found in children. The tumor was discovered during an MRI done in Dec. 2011. Sadly, it was misdiagnosed by a neurosurgeon in Wausau as a rare benign tumor when, in fact, it was malignant. Due to his error the tumor was allowed to grow for a year and a half before we were referred to Madison UW Health.
Once there, Dr. Baskaya immediately took action and scheduled surgery to remove the tumor and get a pathology report. The neurosurgery and oncology teams reviewed and discussed Anne's case many times. During these sessions, they decided that Dr. Baskaya needed to do a second surgery to attempt to remove even more of the tumor. So Anne had 2 major brain surgeries, May 15, 2013 and June 12, 2013. The 2nd surgery left Anne with some major side effects.
The cerebellum controls her motor skills and balance. The tumor was in the left side, so Anne has problems with balance, control of her left side, vision (blurry and double), she has an involuntary flicker in her eyes and overall dizziness. Even after two surgeries they were unable to retrieve the entire tumor — it was radiating into her cerebellum — so she was upgraded to high risk.
As a high risk patient she needed a more aggressive treatment. The team recommended a type of radiation called proton radiation. Madison gave us a choice of Chicago or Boston for access to a proton therapy machine. We headed to Chicago where she endured six weekly sessions of chemotherapy and thirty-one daily proton radiation treatments. The battle is still being waged. In the next couple of weeks her team of doctors are getting her treatment plan finalized to start at least six months of more chemotherapy.
We don't know what will happen after that. Hopefully she will be done with treatment and in remission — If you want to follow her progress you are more than welcome to view her site on caringbridge.org/visit/annegermain.
Thank you everyone.