Decision time

These last 2 days since we got the pathology report have been the hardest for me; I've been trying to process what we've been told, and it is overwhelming. It was easy to sign the consent for the brain surgery; Kol was in pain, and would have died without it. But this next decision is tough. Not only do the treatment recommendations from the oncologists seem to be quite aggressive, but because this type of tumor, in the place that it is, is rare enough that they really have no clue whether or not it will respond at all to any kind of treatment. I don't know how I can agree to put Kol through months of pain and sickness if it's not even going to do anything. But how can I not?

Here's some more info about the tumor, as I understand it at the moment. This is subject to change, because there is a very good chance I missed something, or misunderstood what we were told. The tumor itself is a neuroblastoma sub-type of a PNET tumor. I have it written down somewhere what PNET stands for, but I forget now - I'll let you google it if you want to know more. I'll be doing that too, soon. This kind of tumor is rarely seen in the brain, and are usually in the lower area of the brain. Kol's was near the top. Tumors where Kol's is don't respond as well to treatment, although the neuroblastoma sub-type does tend to respond slightly better to treatment elsewhere in the body.

The cancer clinic belongs to a group of treatment centers called Children's Oncology Group (I think) that collects and shares data on different types of cancer and the different treatment protocols. Any center that belongs to this group - which appears to be most in North America - will recommend the same treatment.

I'm falling asleep, so I'll try to post more tomorrow - about the results from Birgitte's EEG and visit with the Neurologist.