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Edward DeVasher - Journal

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Posted 2014-04-12T01:47:29Z

April 11, 2014: Happy Sabbath!

The sun has gone down here in our corner of Michigan. As we welcome the Sabbath, we wanted to post a quick update. 

Edward's rituximab infusion last night was flawless. His vitals stayed normal the whole time, and he slept through the entire thing. His tremor was worse today--he couldn't sit up without rocking wildly back and forth--but that's the trajectory it was on, and we don't expect to see improvement from the rituximab for several days. Also, this was only the first of four infusions he will get; one each Thursday for the next three weeks.[...]

Posted 2014-04-11T01:16:36Z

April 10, 2014: Changing plans

We called the clinic yesterday and described Edward's worsening symptoms--increased opsoclonus and myoclonus, increased fussiness, sleeping less, and not wanting to be put down. They squeezed us in this afternoon at 1:00, and we had a long discussion with Dr. Mitchell. We love her! She had talked with her colleagues, and they had agreed it would be best for us to start rituximab. It's a monoclonal antibody with a complicated mechanism of action that I don't fully understand, but I gather that it wipes out B cells, which is where the antibodies that are attacking Edward's brain are being made. Wipe out the B cells, wipe out the attack. [...]