The doctor pretty much guaranteed me that I would be calling him in a few weeks saying they were larger. We go back in a month to get them checked.
The tests from June 4 show that she does not have the FAS mutation (which is seen in 75% of patients with ALPS) so that puts her in the rarer two forms, or even in a form they haven't seen before.
It's frustrating because her oncologist hasn't had a lot of experience with this disorder (2 patients total - both with the mutation she doesn't have), so he doesn't know what to say or recommend.
I knew from the beginning this was rare. I knew that this would keep happening. I knew that with no treatment course all we could do is treat each individual thing as best as we can as it happens.
We go tomorrow at 9 am to see the immunologist (who has the colleague at NIH) and I am praying (and will be pushing) for a detailed plan of our next steps. With out that plan in place, I'm ready to pack my van, hit the open road and go to place after place until I can find someone who can help.