Update

Unfortunately, they did not get the prescription called in (& our doctor was out of town) and after a lot of frustrating phone calls, 30 hours later we had the steroid. His arm is weak. It's very sad-last night he was rolling & kind of whiny on the bed. Micah realized he rolled onto his tummy & was trying to push himself up, but his left arm was too weak so he couldn't get up & instead was just kind of rolling round. It made us both incredibly sad. We hope the steroid kicks in to keep the swelling down around the nerves so his left arm & hand will be working better.

Our oncologist called yesterday. She said they have consulted with Brigham & Women's & she's checked with some other pathologists. She herself has even gone down to the lab & looked at the tumor under the microscope. I think there is a bit of curiosity about the characteristics of the tumor. She is also away today & tomorrow (Thursday & Friday) at a National Children's Oncology Group Conference (a lot of pediatric oncologist from all over the nation get together) and she was interested in consulting with other pediatric oncologists about the diagnosis & pathology.

What she was able to tell us is that the topline pathology will read something like 'INI-1 negative...." and was a long description. She said it will be a description instead of the name of a tumor. The pathology is still pending one more chromosomal test on the tumor, but what it all means is that they will most likely still be treating it just like AT/RT & that it is AT/RT with some type of variation maybe. We will meet with her for a final consultation & discuss in more detail the final pathology report & the details of treatment on Monday. Tuesday we have another procedure that will establish baseline for the flow of his CSF (cerebrospinal fluid). Later in the week he will have a port placed in his head for intrathecal chemo (chemo that is delivered directly to the CSF). After a day or 2 of recovery, chemo should be starting. This is all pending our consultation & final decisions made with our oncologist next week. This is our latest update. It sounds terrible to be excited about starting chemotherapy, but truthfully we are hoping to start soon while it is still localized & there is a good prognosis!