Monday morning we went and met with a Geneticist at Goryeb to discuss getting the full genetic work up done on Phoebe.
From this meeting I have good news and frustrating news.
Good news 1 is he was very thorough and went over her extensive medical history, even asking questions that I had planned to ask him about. He agrees with our team of doctors that a full genetic work up will be what gives us our best chance at answers and he wanted to draw the blood that same day, because it takes 3-4 months to get the results and he didn't want us to wait any longer than we already had.
Good news 2 is they only use 3rd party pay labs which means we will not have to pay upfront to have these labs done! He is confident that he can get insurance to approve the testing and he is also hopeful that it should only cost us a couple thousand, at most, out of pocket as our copay for the testing.
Frustrating news 1 is insurance put a pause on drawing the blood on Monday, and wants to conference with him first before approving the testing. He is confident this is just a small hiccup, as he says "I do this all the time, and I get them to see it my way". This just means we now have to wait to get the testing started, which means we wait longer for the results. If I don't hear from him by the first week of December, I am to call him.
Frustrating news 2 is our immunologist here doesn't want to start any medication until we get the results of the genetic testing back. Our "Patch Adams" we saw at CHOP had a plan that if the NK cell test came back normal we were to start one medication, and if the NK cell test came back low again we were to start another medication. Well since the repeat NK cell test came back low again, I asked the immunologist up here if that meant we were starting this one med and he said he wants to hold off to see if the genetic test gives us other options of treatments. He said this medication is a "big gun" and carries it's own set of concerns and things to watch for, and he feels we should know all our options first.
I'm going to request a team meeting so all our doctors can discuss medication and if there is anything we can try while we are waiting for these results, especially since we haven't even done the draw yet.