Another setback?

Hi everyone:

Today ended up being a pretty emotional day, although we're still not exactly sure where we stand. This morning, dermatologists told Patty that the initial results from yesterday's biopsy of her rash suggest that she has some form of lupus (a chronic autoimmune disease that attacks human tissues, and which, in its most severe forms, can attack vital organs.) Although this can be a serious (but rarely fatal) disease, it can also be more of a nuisance in its less severe forms. Our best guess right now is that Patty's condition would fall into this category.

Some other doctors seem a bit skeptical about the results, in part because Patty had been tested for lupus months ago and the results were negative. Others feel that more testing needs to be done before any conclusions can be drawn. So, now we're back in a holding pattern while doctors do more tests and try to come up with some hard data. To those who were thrown into a fresh state of worry about yet another disease to manage, we apologize -- in the interests of keeping people current, uncertain info may arise from time to time. Please stand by...hopefully we'll have the details soon.

On the positive side of things, we now have online access from the hospital! A friend of Luke's very graciously shared her access info with us. I would thank her by name, but I'm afraid that would leave us open to getting cut off. Thank you, Luke and unnamed-but-much-appreciated person. This morning, Patty was actually in tears because she couldn't read the blog and the comments people post in response; she's smiling now.

More potentially positive news -- one of Patty's cardiologists suggested that if they can get the catheter in place (most likely tomorrow), she may be able to go home for the weekend and return for plasmapheresis next week. We're really keeping our fingers crossed for that one, because we've already been here much longer than we had first thought. Overall, we've had moments of frustration this week that the wheels seem to be grinding slowly, but we have acquired some answers, so I guess we shouldn't really complain. Also this week, Patty's cytoxan dose has been reduced by a fair amount, so this may ease her nausea somewhat and also bump up her white blood cell count.

More soon...

Love,
Brian

Patty wanted some candy, so I brought her a big tub of it -- she's now pretty popular with the medical staff



MB during her visit yesterday



Fine dining with white linens (yesterday)