But what I never expected was to be coming home with what we did.
I never expected to be coming home with more questions than we went down there with.
I never expected to be coming home with the knowledge that it is most likely multiple diseases/disorders affecting Phoebe and that they don't know what any of them are or how any of them are connected let alone if they are connected.
I never expected to be coming home knowing testing that we thought could help us with a diagnosis offer very little help because of the severe lack of knowledge and understanding of the complexities of 90% of the genome and immune system.
I never expected to be coming home knowing that there is a very good possibility that we will never have a diagnosis. That far too many people pass without ever being diagnosed.
I never expected to be coming home with another system of Phoebe's having complications, which is as equally scary as it is a blessing. It was not what they were looking for or expecting to see on the CT. But we would have never known until it became really dangerous.
My first initial question after hearing all that I did at our exit meeting was "what do I do for Phoebe now?" A simple question that for a brief moment I forgot I already knew the answer to.
We continue to fight. We continue to search for answers. We continue to raise awareness for Rare Disease and Undiagnosed patients. We continue to treat every flare up. We continue to do for Phoebe everything we have been doing before we went down to the NIH. We continue to Roar.
And while we do, the NIH will continue to run tests and do research on Phoebe's case. And maybe, if we are lucky, one day we will have the answers we need.