Loose Strife

I keep getting asked how Lily’s first day of school went. She’s now had two half days and starts full days of kindergarten on Tuesday. So far so good. Excitement riding the bus and only good things to say about school. As a girl of few words who clams up when asked for details, she […]

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I don’t really know why, because I hardly did anything, but I’m trying to remember the series of events during our trip to Virginia and it’s not quite all there. I checked my camera; didn’t take many pictures either. I drove Laura and the girls down to Annandale on Friday. We stayed with her parents […]

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Laura’s been doing about the same over the last couple days. Maybe a little more pain. But mostly she’s frustrated about her fatigue and irreversible troubles like her double vision. Her fatigue continues to be severe — as I mentioned last time; she struggles to keep her eyes open most of the day. And so […]

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Photos from June, July, and part of August are finally up in the photos section.

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Over the last week Laura has been in surprisingly good spirits even as her sundry problems continue to worsen. Her vision and balance is further deteriorating, which is her main complaint. Getting around is annoying and sometimes difficult. Laura can’t decide whether the double vision is better than the loss of depth perception if she […]

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Laura has continued to do well in the sense that she’s keeping food down and is not in much pain. She sleeps till noon, but then has much more energy than she has had for months. Baking a cake, finding new recipes — she hasn’t cooked anything for ages — and today she spent the […]

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The last two days have been surprisingly very good for Laura. I’m keeping my fingers crossed that the drugs she started on Friday are the reason why she is no longer throwing up, is eating normally, and has had no headaches. And when Laura’s awake, she’s been doing lots of normal activities — rummaging through […]

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Laura was finally discharged after 9 last night (Wednesday) and we decided to spend the night in Boston. This morning Laura was feeling really lousy — probably because she was off her IV fluids and hadn’t had pain medicine for over 12 hours. I brought up the subject of intrathecal again. I felt there was […]

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I’m at the hospital to pick up Laura. Waiting for the discharge orders. Her neuro-onc felt that there was nothing more that could be offered in the hospital now. This is not really good news. Her symptoms are not under control – the main problem being the vomiting. But anti-nausea drugs don’t seem to work […]

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Laura has been in the hospital now for over three days and is bored, so call her at 617-732-4366. She’ll still be there for at least another two days. The cause of her troubles is still uncertain, a treatment plan hasn’t been settled, and her symptoms aren’t adequately controlled. Not for lack of trying. Laura […]

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