A long process

The hardest part of blogging is the title. 

This is just an update in the middle of our busy week.

Yesterday was all about lung issues with Shelbie.  It ended up being a short visit because she really can't start treating anything until she knows what she is dealing with.  Our Pulmonologist, quickly said, "Let's biopsy these ASAP."

Until...I told her about the last biopsy she had and how difficult recovery was. Still, she is not feeling good about that PET scan from April the results it showed.  Her biggest worry are the enlarged lymph nodes sitting around the lungs.  She thinks a biopsy would be easy enough in terms of getting to those ones. 

There are basically two different roads this will take...

1.  She wants her re-scanned.  If the lymph nodes are still there, same size or larger, then she will suggest a bronchoscopy with lymph node removal for biopsy.

2.  After the scan, another pulmonary function test

3.  Decide a course of treatment. 

She was actually quite surprised that they haven't already started her on the chemo drug Rituximab.

Tomorrow we will hopefully get a more concrete plan in the works after Oncology clinic but I have a feeling this story line will take us through the summer before it resolves into a decided course of treatment. 

It was a difficult day for Shelbie.  The waiting is hard, especially when these different specialties see the scans and read the reports, they all sort of panic a bit and here we are just la-de-da- ing our way through life, trying to do anything BUT panic.   Our Oncologist is considered the lead doc in this matter because it overlaps immunology and oncology so he apparently, has the last say. 

Sam had another CBC to see if the transfusion made a difference in his counts.  He did get a bit of a bump but not much of one.  His counts are still very low.  His red count is up a tiny bit which gives us a little breathing room.  We are planning to stay the course in treatment for him.  His next transfusion will be on Thursday of next week and every Thursday from here on out.  The specialty pharmacy is sending all of the supplies and the new pump out tomorrow so I will have a few days to get my medical supply closet organized.  We have a growing closet of stuff!

We are taking it all in stride and despite a crummy day yesterday, Shelbie is feeling better about things today. 


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