3 yr old girl with an inoperable cerebellar tumor grade 1

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3 yr old girl with an inoperable cerebellar tumor grade 1

by sineadak on Thu Mar 21, 2013 03:55 PM

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I am a mother for a 3 yr old girl diagnosised 1 yr and 4 mths with an inoperable ganglioglioma of the cerebellum. DD has ataxia gait distrubance irratic eye movements head tilt some slurred speech. we have had biospy and above confirmed we are now on a treatment plan of watch and wait.apart from the above she is beautiful and smart and intellegant and funny she can sing and trys to be a ballerina (even thou she might fall) she is affectionate and so cute, we are looking for someone anyone out there who might have the same condition with an insight to the what happens next Regards Sinead Ireland

RE: 3 yr old girl with an inoperable cerebellar tumor grade 1

by vwxyz on Fri Mar 22, 2013 06:34 AM

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Hello, Sinead.  You did not mention if your sweet daughter has a benign tumor or not.  The part of the brain it is in affects the balence.    My son has a malignent form of cancer(anaplastic oligodendroglioma) that responded to standard treatment well after 3 years since the operation for 80% removal in the cerebellum.  It is these last 7 months he is able to relax and enjoy life as it is just a bit.   He is left with balence issues, some short term memory, has difficulty speaking, and gets tired easier with his eyes slightly moving.  We were told it is because the area treated in the cerebellum is so close to the occipital lobe which has to do with eyesight.  He describes the balence issues as "the world is spinning" when he gets up without taking it slow; or he has so much on his mind, he is not mindful of using the muscles the physical therapist taught him to use while on his feet."  He admits to falling 4 times and hitting his head while he was alone. We were thinking it might be a good idea of getting him a bicycle helmet to wear for protection when walking in icy weather.  I do not think that the medical field will use radiation on any child younger than 3 years old.  I do not know about chemo or an operation.  I had a benign ganglioglioma successfully removed by a top hand surgeon from the palm of my hand years ago. The brain is a very different subject.    

Wishing you all well, Jan 

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