I’ve been an educator for 16 years and a high school librarian for eight. I teach kids how to do research, so I know how to find stuff online. And that’s exactly what I did after my husband, Mark, was diagnosed with a rare skull base tumor called chordoma of the clivus last summer.

None of the doctors or specialists we saw here in Alabama could even tell us what it was, much less how to treat it. One thought it might be an...