During our discussion, he mentioned that there was a slight change in plans on how we would proceed with Phoebe.
The most worrisome levels that we have right now are her NK cells. She as very few of these cells, and the few that she does have have very little function. We need to repeat this testing first, before starting any kind of treatment.
If her levels come back normal, her last test could have been a fluke or an error and she can start her immunosuppressant treatments. If her levels come back as low as the last test, we will not be able to start her immunosuppressant treatments.
He also told me that he needs to look into the full genetic testing we need done. While he agrees that we need to do this, he wants to find the best way to get it done. If we draw the blood in New Jersey and overnight it to a lab for the testing, we would have to pay for it all up front and then fight with insurance to be reimbursed. Since it is a 20 thousand dollar test, he does not want that to be the way we go about this.
He wants to do some leg work and conference with the immunologist in CHOP to see what the best way to proceed will be. Limiting Phoebe's travel is one of his top priorities.