Better Late Than Never

I called the Oncologist again and let them know I'm not please that I hadn't heard from them yet and I have been calling since Monday.  The nurse said we had an appointment at 2!  ACK!  Since we're not 100% comfortable moving him and none of our other questions had been answered we weren't feeling very confident in whatever was going on. It turns out the Dr DID call someone last night, he called our hospice nurse.  Not really sure why but I mentioned that I wasn't happy about that.

Then I called insurance to double check that if he did go in to get the Avastin (chemo) that it would be covered since hospice was telling me that it wouldn't be covered.  Insurance said yes.  Then I called the social worker at hospice to find out if anyone could administer the drug at home.  Turns out that of all the people who can do at home IV chemo in eugene/springfield no one can do Avastin.   Handy. 

I also talked to our hospice nurse who was going to come out to see us today and discussed everything with her, that's when she told that the dr called her last night.  Thanks for letting us know!  It was a frustrating morning.  Everyone was telling me different things and conflicting things and I really wanted some clarity.

Dr Sharman's (oncologist) nurse called and shed some light on everything.  After talking to everyone involved and a long discussion with the Dr she finally gave us answers.  She said the Dr believes that David started having seizures on thursday because of the trauma of his transport home.  His body is weak enough that it set off some negative chain of events and he doesn't think that it's worth the risk of transporting him right now.  I'm relieved to hear a medical professional say the same thing.  He is on the fence about how effective the Avastin would be at this point but he's not ruling it out.  The plan of action is to get a physical therapist out to the house (we can do that with hospice) to try to get Dave more mobile.  They'll monitor his vitals and make sure he's safe.  Dr Sharman feels that if Dave isn't strong enough to get moved to the office in a wheel chair then he's not strong enough to be able to get the Avastin.  That makes sense to us and we're glad to have some confirmation from a doctor that our gut was right about the dangers of moving him.  Lastly she said that they don't want to talk to our hospice nurses, they want to talk directly to us so there is no middle man.  Hopefully that will take care of the problem where our nurse was contacting him and he was getting our info third hand although she was giving him her professional opinion as well. 

Our nurse also mentioned to us that they've had fragile patients decide to be transported when the dr and nurses felt they weren't stable enough and they've had people not survive the transfer.  SO not worth the risk.

Hopefully the physical therapist will be able to help David get stronger.  In the mean time we were told to start the at home chemo, the Temodar.  It's double the dose than what he took before but it's only for 5 days a month to try to hit it hard.  Tonight was the first night of that and no side effects to speak of.  I hope that trend continues.

I also heard from Dr Hauck's (the neurologist) physican's assistant, Nicole.  She's been really fantastic but I left her a message with her service on friday and she apparently never got it.  The whole point of a message service is to give them messages.  Total fail.  She ended up giving me her cell number and told me to call at any time.  Awesome. She thinks they're going to leave David on the same steroid dose instead of lowering the dose like they originally intended but she's going to check with Dr Hauck.  They don't want the swelling in his spine to kick back up and cause him more problems.  She's going to get back to us with a final answer but it sounded like they weren't going to change it just yet. 

We're glad to have a plan of action even if we can't do the other chemo just yet it isn't out of the question.  All we want is for him to be able to fight this in whatever way we can as safely as we can.