Journal entry by Suzy Burk —
I apologize for not updating sooner. We didn't get a pathology report until late last week and then met with the oncologist yesterday-wanted to wait until we had all of the information.
The final official diagnosis is a grade 1 tumor-benign! Yay! Specifically they are saying a ganglioglioma.
Initially there was not consensus on tumor type-between a ganglioglioma and a PXA (which is also benign but considered a grade 2 tumor). There were consults with UVA and Texas and then samples were sent to the Mayo clinic for additional testing. There they determined the tumor didn't match any PXA criteria. Apparently the tumor is a rare type and appears to be a despmoplastic infantile ganglioglioma-but Kate is not an infant and therefore making it more rare. They also recently sent samples to NIH for additional testing.
We met with the neurosurgeon last week and the oncologist yesterday. Kate will have an MRI in late November/early December and then likely yearly for the next 3-5 years. No other additional treatment or procedures are expected.
Kate will continue to see a neurologist on a regular basis and hopefully will be taken off of the antiseizure meds by the end of the year.
Kate is headed off to Coastal Carolina mid August to start her freshman year of college! :)
What a scary crazy experience. We are so thankful for the positive outcome and the support of all of our family and friends. Thank you all for everything!
The final official diagnosis is a grade 1 tumor-benign! Yay! Specifically they are saying a ganglioglioma.
Initially there was not consensus on tumor type-between a ganglioglioma and a PXA (which is also benign but considered a grade 2 tumor). There were consults with UVA and Texas and then samples were sent to the Mayo clinic for additional testing. There they determined the tumor didn't match any PXA criteria. Apparently the tumor is a rare type and appears to be a despmoplastic infantile ganglioglioma-but Kate is not an infant and therefore making it more rare. They also recently sent samples to NIH for additional testing.
We met with the neurosurgeon last week and the oncologist yesterday. Kate will have an MRI in late November/early December and then likely yearly for the next 3-5 years. No other additional treatment or procedures are expected.
Kate will continue to see a neurologist on a regular basis and hopefully will be taken off of the antiseizure meds by the end of the year.
Kate is headed off to Coastal Carolina mid August to start her freshman year of college! :)
What a scary crazy experience. We are so thankful for the positive outcome and the support of all of our family and friends. Thank you all for everything!
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