The oncologist was really nice, and actually spent an hour with me and explained things to me.
Basically, with how little is known about the immune system and all of it's diseases and disorders, they need patients to fit into certain bubbles to have a definitive diagnosis. Phoebe and all she is experiencing does not fit into one of these bubbles, so we can't get a definitive diagnosis, at least yet. At any time she could have the specific labs and presentation that puts her in a specific bubble or they could classify and name a new bubble that she fits in.
He explained what she has been experiencing could mean the "gates" just haven't fully opened yet and this could all be the tip of the iceberg. Or it could mean they have not named/identified exactly what is going on with her. (both very common with rare disorders) This also could be her "normal", where she doesn't get better but doesn't get worse. Only time will tell and all we can do is wait.
He also said that the only thing he could definitely say is that this is an autoimmune disorder, and regardless if it is named or unnamed the protocol is the same. We treat each symptom as it appears.
He said medically, they are getting better with naming things and classifying them, and that they are slowly chipping away at the big bubble of immunity, but there are no real advances in treatments for the wide variety of diseases and disorders they are finding.
If her symptoms get worse or all her levels go out of whack, they will then put her on an immunosuppressant.
The reason for our extended stay is he wants us to see an immunologist because the levels of her NK cells and their functions are worrisome.
So this next specialist will determine our next step and tests.