hospice

It's been almost 5 months since the last post. Things have been happening. Seizures? Maybe. Hospital? Definitely. Rehab, more rehab, and then a calm realization.

Marie is now in the Hospice House here in Omaha. I promise I'll get you all caught up. Right now I can say she has been in hospice for 6 weeks with more time to come.    

just wait

We are waiting for the arrival of the clinical notes and the MRI from the July trip to NIH. Then the medicals, here in Omaha, will make some decisions. All we can do now is wait, It's too bad the tumor isn't waiting.  

why no news

It's hard to post when things are in the middle of happening.

what a day

Friday the 13th has finally reached our neck of the woods. We went back to Bethesda this week and returned on Friday. Our flight leaving DC was delayed a couple of hour because the crew could not find the co-pilot. That's right, they didn't know where he was and they never told us either. Then our connection from Chicago was delayed due to thunderstorms. Not unusual during a hot summer. When we boarded our plane we were then told we had 2 flat tires and they made us deplane to fix them. We finally took off about 1:00am. That still didn't match with the news that the tumors are growing and that carboplatin is no longer an option. Great the only thing that has works so far.

infection

This week Marie battled an infection. It crept up for nowhere. She hasn't had that happen since the 2009 episode of staff infection. It appears to be under control, but why did she get it. Is it because she no longer is getting the Nuelasta.  The medicals tell me no. Oh wait, I don't think you know about the Neulasta story.

yes more life

I'm convinced that the National Institute of Health added a year. And that's by stopping the tumor from growing. Actually there was even some shrinkage. This last MRI in June 2012 didn't have the same positive results. There were mixed results. Some tumor growth and some shrinkage. Not tumor shrinkage. If not tumor shrinkage then what? Necrosis? Maybe. We go back on July 12th.  

back to now

I can bore you with continuing posts since last September but I won't. We made a total of three more trips, I think and they were pretty much the same. Until June 2012. More on that later. Each of these trips was an exciting to us and the medicals. They were helping. The treatment was working. Shrinking tumor. More life?

process

The process was to be a simple one. Two or three chemo treatment then back to NIH for an MRI and doctor visit. We were to fly from Omaha to Washington on a Thursday, get the MRI that evening, see the doctor early on Friday morning them fly back to Omaha Friday afternoon. All in all it was quick and effective, but for Marie it was exhaustive. But it was working, so what the heck.

september 2011

The MRI showed positive results. The tumor was stable. It stopped growing. In my mind it meant no growth equaled more life. I didn't know if that was true but the medicals at NIH seemed pretty happy. THe orders were to keep doing the carboplatin and come back in 8-12 weeks.

wow

Wow, it's been nine months since the last post. No, we haven't gone anywhere. We're still here and Marie continues to battle a stubborn disease. A lot has happened and more is coming. The reason that I have not been posting is not because nothing has been going on, Quite the contrary, there have been trips, MRI's, treatments, insurance hassles, changes, and more changes. Successes and disappointments have rounded out the roller coaster last nine months.