Hi everyone. It seems like we are always on the way TO Pittsburgh or getting HOME from Pittsburgh. Soon after we got back home after the seizure related hospital stay, we got the call that the biopsy results were in. My stomach instantly flipped, Brian fell apart, and Al looked like he was hit by a truck. We hurried to get ready to go and had a very long, quiet, scared, somber trip. We were meeting the surgeon at his office. Originally he wasn’t going to be able to meet us until Monday, but I think he sensed how fragile we all were at that point. He kindly fit us in between surgeries. We were about the last to enter his waiting room, but about the first to be called in.
It IS a tumor. But, it is a low-grade, #2 tumor. That means it is one level above the type usually found in a child. #3 and #4 are far more dangerous. At this time, it is NOT malignant…but is a type that COULD in the future change to a malignancy. It is EXTREMELY slow-growing—he may have had it since birth. It has NOT infiltrated the brain. The surgeon and the neurologist recommended the same specialist to us—he is considered the BEST of the best in Pittsburgh. It is difficult to get an appointment with him, but the surgeon sent an email requesting he take Brian. Brian got his appointment this afternoon. The surgeon believes he will be treated with chemo—surgery is too risky because the tumor is situated behind the motor (movement ) area of the brain and close to the speech center. A tumor of any kind is not a good thing, but Brian is young,extremely healthy, and fit. He has been training to run the Pittsburgh marathon. He has now cancelled out of that, but his fitness will serve him well. The tumor was found by accident really! He had an MRI because of soreness in his neck and his PCP saw the spot…so it was found very early—no symptoms. As bad as a tumor sounds, there are many positives to Brian’s situation. Many people have it worse. Brian will not be able to drive for 6 months. Luckily there is a bus stop down the hill from his apartment. There is still a possibility of more seizures, but he is doing well now on his new meds. We are praying for the best outcome and have been flooded with best wishes from many, many people—friends as well as strangers. Our small family will stick together to see Brian through this. I keep thanking all of you that expressed concern, but I could never thank you enough. Love you all–Jan