mrspink

Hi Susan, Sorry for the delay. It's been a crazy week. 

My dad is 66. It ended up being a pretty intense few days. He completely lost his ability to speak and tests indicated seizure. Started him on anti seizure medication which he is slowly showing improvement on. He was releasedf from the hopsital on Sunday. 
They also found that he has developed a heart arthymia and there was a debate on starting him on blood thinners. They decided against it because of some blood still in his brain. 

He has signed the HIPPA release form for me so I'm getting more invovled now. 

Now we're in recovery mode and starting to get back on track wtih a PET scan and trageted radiation in the next week or so. 

Thank you. 

Thanks again for your replys. My dad had a nurse and speech therapist come to their home today and they finally red flagged his progress and behavior. 

He's in the ER running tests. Thanks for encouraging me to push a little harder I think it helped with my mom's decsion to take him in. 

Thank you both! 

From what I was reading it didn't feel right to me either. It's hard not being directly involved with his Dr's. (My parents said I can be but I'm having a hard time getting connected with the Dr's. I live about 2 hours away)

The first week or so after he seemed to be doing SO great too…so this was a bit shocking. 

Thanks. He was refusing to go to the ER with her last Sunday and I called 911. So he was seen then. 

I'm pushing her to get him in asap but she keeps saying she's talked to everyone and she's seeing his primary on Tuesday (not sure what that will do). 

It's a hard balance on inserting myself into this. 

Thank you! I read your husbands profile and it does seem very similar to my dads. Thank you for sharing. Good news is his surgery went well yesterday and he is recovering in ICU. They got out another tumor the size of a lemon so now on to the next step. 

I'm scheduled for a call tommorrow with some of the Dr's on my dad's team so I'm hoping to get a better understanding on next steps. 

Thanks Jen! I really appreaciet your reply. This forum has already given me a lot more hope. Hope your dad continues to do well. My dad's next craniotomy is Monday so ready to get past that hurdle and on to the next. 

Thank you Ann. 

You all are really amazingn and I so apprecaite the thoughtful and calm responses. I'm sharing my dad's story and asking questions to EVERYONE I can in the hopes they know something. I'm mostly met wtih "I'm sorry's" so these responses are giving me so much hope and understanding. 

Thank you everyone!! 

Thank you Niki. I"m in San Diego and my Dad is in Orange County so all your reccomendations are fantastic. It does help hearing this is the most terrifying time. The unknown and the amount of information I'm trying to take in is a bit exhuasting. Thank you so much for the reply and the hope. 

Thank you Linda! I'll be looking up Dr. Hamid and Dr. Freeman now. You are ALL so amazing on this board already. 

Thank you Maria. I work in video prodcution and have done work with a lot of immunotherapy groups down here in San Diego so I'm somewhat familiar with it. I've calling in all favors right now to speak wtih everyone I can. Thank you for the reply. 

Thankn you for the reply and the hope Dawn!