The latest

The Wife was telling me a story the other night about one of her dogs throwing up.

The Young Daughter observes this mess and says something along the lines of, "She must not have taken her medicine. When I take my medicine, I don't get sick."

The Wife was quite surprised by this. We had no idea that The Young Daughter had drawn the connection between her medications and her episodes of the past few months, which were usually punctuated by vomiting unconnected to any real nausea or upset stomach or carsickness or any other condition that usually generates vomiting.

Among the medicines she's taking is Thalidomide, the drug immortalized as one of the memories of the '60s in Billy Joel's "We Didn't Start the Fire." (Third verse: "Starkweather, homicide, children of thalidomide.") Baby boomers remember that the drug was originally the miracle cure for morning sickness, with the unfortunate side effect of horrendous birth defects. The drug was taken off the market in the United States until 1998, when it was approved for heavily controlled clincal trials. There are those, including one of the doctors that we are seeing, who believe it might be effective in treating neurofibromatosis.

I, of course, am in favor of most things that might help. Research seems to indicate that only serious side effects of this particular treatment are in utero. The Young Daughter's 5; that's not a high risk. But that doesn't make us any less apprehensive about it.

In two weeks, The Wife and The Young Daughter are traveling to Birmingham, Ala., to meet with the man who literally wrote the book -- actually, several books -- on NF1. Will he have some answers? We don't know. But we'll keep asking the questions.

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I am reminded of a story from May 2002 (click here and scroll down to May 10, 2002), back when I had no understanding of the realities of this situation and wanted said understanding even less.

The link to the press release in that post was active until fairly recently. It's been awful quiet out of Dr. Parada's office lately. He said "five years." He has one year and one month left to restore my faith in the medical profession. The clock is ticking.

The clock is ticking, goddammit. Find a way to fix this. Now.