I’m not going to try to make this post anything spectacular. I’m not going to attempt well-written words. There is no theme. There are no pictures. No catchy bloggy things. I’m not going to try to recap the last 6+ months of the search for a diagnosis, it’s all here in previous posts and the “Old Posts” page that chronicles the first half of the journey. I’m not trying to reach out for anything. I’m going to explain this as best as I understand it. I might get some of the medical details wrong. And I won’t go through my usual proofing and editing process. I just want to share the information.

On Wednesday Shawn had a biopsy of one of the nodules on his spine. On Friday afternoon, his primary doctor stopped by his room at CHOP and told me that she had some news. The news was that some of the biopsy results were in and that the tumor is malignant.  He has a Primary Disseminated Embryonic Tumor. It’s malignant. The prognosis is a bad number.  There are three potential types – medulloblastoma, pineoblastoma, and supratentorial PNET. The source of the primary tumor defines which it is but we will never know for sure and the treatment is the same.  It’s Grade IV.

Today Shawn’s father and I met with our new team (some overlap from our old team) in neuro-oncology. We learned the treatment plan. It’s aggressive and brutal. We’re scared out of our minds.

We finally have a diagnosis and a plan, the two things I’ve wanted for a very long time. It’s the end of a long journey and the beginning of a longer one.