Waiting...

Nathan had a bone marrow biopsy along with a lumbar puncture (I.e. Spinal tap) early this morning. It's almost alarming to realize how much more calm I was this time than I was during his first anesthesia and bone marrow biopsy, strange how all of these extreme circumstances we've found ourselves in somehow begin to feel normal. How quickly we adjust and adapt and learn to cope with the frightening uncertainty. It doesn't hurt that Nathan is still mostly his happy, silly self. He had all the doctors and nurses in hysterics going into today's procedure, they had never seen a kid like him. He's amazing, always able to have fun and smile despite what he may be facing. But now we wait, waiting to hear if they found evidence of hemophagocytosis (which they like to refer to as PAC man cells) in the bone marrow asperate or in the spinal fluid to seal the diagnosis of hemophagocytic lymphiocytosis (HLH), or if a different diagnosis may be brewing. Initial views show some evidence in the asperate but not the spinal fluid but they need the pathologist to look at it for confirmation of this irregularity, and view the overall cellulararity and function within the bone marrow sample. We should have some answers today and the rest on Monday... Possible re-admission to the hospital to begin more agressive immunosuppressive treatment on Monday and we are all preparing for the possibility of an impending long hospital stay. His blood counts continue to decline even though his liver is showing some improvement. And yet his outer appearance and demeanor don't come close to matching this internal picture. It feels good to be able to cook and eat real food here at the Ronald McDonald House, giving him the fuel he needs to fight this battle, and lots of love from us and his huge support network of family and friends. Still it is clear that all the clean eating and positive energy in the world couldn't possibly reverse what I lovingly refer to as the mother of all autoimmune shitstorms. I tend to avoid medical intervention if at all possible so this situation has been quite humbling to say the least. I'm just so glad that we at least caught this early. The rest is mostly out of my hands so I just need to trust that it'll all work out... Take care of the outside while his doctors take care of the inside.