GroshLink

Dear Friends and Family,

On Thursday, 9/15, Eden had her follow-up MRI at Children's. Later that evening her doctor called us with the results which show that the affected area in her brainstem is larger than it had been. This was quite a shocker to us and the doctors since her neurological symptoms have been improving over the summer. No one expected to see what the scan revealed.

So what do we do now? We spoke to the neurosurgeon on the phone this morning (9/16) and he gave us the details concerning the possibility of a biopsy. We're now back to where we were in March when we were uncertain as to whether the mass was a tumor or a vascular malformation. The only way to know for certain is to biopsy the mass. Because of its critical location this is a risky procedure and we don't want to proceed without as much information as we can gather. Therefore our next step is to show the scan to other leading neurosurgeons, neuro-oncologists, and radiologists to garner their opinions. Perhaps there is someone out there who has seen a case like this before and has some wisdom to lend. Our doctors will be attending a conference next week with other neurospecialists and they will show them the scans and come back to us with more opinions.

If we go ahead with the biopsy and it reveals that the mass is a tumor, treatment is chemotherapy. If it reveals that the mass is vascular the traditional treatment is surgery, but because of its location I don't think that's a possibility in Eden's case.