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Time for an update. I published this on my fundraiser, but, not everyone can give, and it's not fair to those people. So here's the details: I am still amazed at the outpouring of support. Thank you. gofund.me/8e1bb24c0

I’m in a weird spot right now. I feel like the trial drugs are working, however my liver is not. I’ve gained 10 pounds since my visit to Philly a week and a half ago. I look like I’m in the 8th month of pregnancy. I have ascites that exist because the liver cannot do its job effectively.

I’m on water pills to try to manage this and at least stay stable. And water pillls really do make you pee. However, I’m not peeing enough to go backwards into month 7 of pregnancy.

So because of that I’ve asked to get the ascites tapped, which is a process to drain them. I’m planning on doing this here at Ohio State, but I need to get it scheduled. They’re working on it but I won’t hear anything until Monday. I’m hoping we can schedule something early in the week.

On Friday I get scans and on the following Tuesday I have an appointment in Philly to get more trial drugs I want to stay on the drugs, obviously. Hopefully the scans show an impact in the liver and we are able to keep going

If I'm not able to stay on the trial drugs, I expect to enter formal end of life planning. My wife has been thinking about this a lot, and is trying to figure out who would actually show up. Because we have small families. it's not like 200 people are going to show up because of them, it's like 12.

So she's trying to figure that out. Formal end of life shit is...something i won't be able to avoid forever. I probably need to create a bitchin soundtrack to play. I also need to create messages to my kids on the milestones I'm going to miss.

DO NOT WANT. *sigh* But have to plan for it a little. Because at some point I won't be able to create a bitchin soundtrack or create the messages to my kids. I can't fail on those things. Sorry to end on the "downer", but that's the update of what's going on.