Shaneswife

I am having to admit Shane to hospice. I'm so broken inside over it. I'm waiting for a call back as they are looking for a bed for him and have labeled him as critical so hopefully he can get a bed today. He can barely speak and hasn't gotten out of bed all day. I'm waiting for psw's to arrive to assist in cleaning him up before he leaves. I can't believe that the day has come. 

 

Janis

Thanks for the kind words of support. Shane is no better this evening. The seizures continue and they've put him back on 16mg of dex. He still can't speak correctly. Gibberish comes out for the most part. Pembro has been put on hold until seizure control is achieved. It's been a long 48 hours of no sleep but no where near the suffering of my dear Shane. 

 

Janis

So Shane is home now. They have added 300mg of Dilantin to his medication routine. The er doctor wouldn't get the on call oncologist because I felt a scan wasnt prudent so I have to call his oncologist first thing Monday morning as I want his opinion on if he should have another scan and if we should go back up to 8mg of dexamethazone as we'd decreased to 4mg 5 days before the seizure. The er doc didn't seem to think so and recommended that we go down to 2mg as per the taper plan. But I don't want to do that until I have a 2nd opinion from the oncologist. 

I'll tell ya, having a seizure this morning to the point I thought he was dying in my arms and looking at him now it's like it never happened. He rebounded so quickly. 

The Dilantin sure makes him act drunk though. And combative but they said that could be because they infused it quickly. I'm hoping the pills don't cause the same level of stupor cause he was literally falling down like he was drunk from the drug when he tried to walk. And combative with the nurses about ripping off all his leads and trying to rip his iv out cause he "was going home". It was quite the site. 

Thank you all for your kind words. I follow all your stories and bestow good thoughts on you all daily. 

Janis

That should of read can't get coverage for the doublet. 

Bone, brain, lungs, liver and sub q. He did interferon but it didn't work. Then targeted therapy but that failed too. He was gonna start pembro when he decided that he was done with treatments. He passed 2 weeks later. 

The specialists say in Canada our protocols indicate a washout period between braf/mek and radiation to switch to ipi and nivo. So frustrating cause I know he will be off meds for weeks.

Shane had out of the blue tremors and stroke like symptoms in November. They’ve gotten better with the steroids but not gone. I worry they won’t be able to get him off the steroids.