Monday, May 6, 2013

Nothing is Easy

I always have to go back and read my last post so that I know where to start.

Mia had her first round of her new medication, bendumustine, a little over four weeks ago.  About ten days later she went into the hospital with a fever and spent a three days.  A week ago we went in to have her counts checked and hopefully start her second round, but her counts were too low.  This past Thursday we went in again and still her counts were very low.  If the bendumustine was working there should have been some sort of response.  Because there wasn't the doctor ordered another round of diagnostic tests done.  She had another bone marrow biopsy and lumbar puncture on Friday.  Today we went in so that she could get a red blood cell transfusion.  Her platelets this morning were at 5 and her hemoglobin was at 6.  She received two units of blood.  While we were there she developed a fever and was admitted to the hospital.  She has a couple of scratches that are inflamed.  She also has two ear infections.

The answers from the testing will help us determine the next step in her treatment.  If there is some evidence that the bendumustine is working then we will proceed with another course of it.  However that seems unlikely.  There are two more options to try.  I can't remember which drugs they are.  Our doctor let us know that once we have tried the next two options there is not much more that can be done.  I think there are some more drugs that could be tried but it would be up to us as to whether we want to try them.

Things are tense around our house right now.  Casey and I are both so worried. I find myself in tears at the oddest moments. There is such a roller coaster of emotions.    I will try to keep you updated as things go along.  Mia does not feel well right now.  But she still talks and smiles at everyone around her.

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