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desmoplastic infantile ganglioglioma

PostPosted: Sun Nov 03, 2013 7:47 pm
by dward555
After being misdiagnosed with a misshaped head and torticollis, at 3 months of age our grandbaby’s fontanel started to bulge. He was diagnosed with a rare brain tumor, desmoplastic infantile gangliolglioma. Surgery was performed and his tumor surrounded by multiple cysts was removed. The tumor occupied 1/3 of his brain cavity (10cm in diameter) . Dr’s were very confident that all was removed. Had one seizure a day after the surgery, and has been taking keppra ever since. Other than that he is absolutely normal, and no brain damage is apparent.
5 months later after a full MRI, our world was rocked once again. He has growth, one cyst and several tumors. One toonie size in the center of his brain and the others in the vicinity of his previous tumor. At 8 month of age he has a second operation. The doctors remove most of the tumor at the center of his brain, unfortunately it was attached to main vessels. All other tumors remain
He is growing and developing like any 9 month old baby. He is always happy and it is so hard to believe he has so much going on in his beautiful head. He starts chemotherapy tomorrow at the age of 9 months.
Have read about non traditional treatment and would like more info. We will be giving chemo a shot, but would like to hear about other options.
He is at the Childrens Hospital in Calgary, Alberta