"Henry continues to do well. Joey and I were updated by the doctors today on Ian. There is still uncertainty about what caused this with Ian but HLH was the theory that was discussed. There are two types of HLH, and my understanding is that a virus can trigger an overly aggressive immunological response that would be very similar to the rapid deteriorati...on that we witnessed with Ian.
The problem that we are facing is that HLH doesn't have a test that there is a positive or negative result, it is more of meeting a certain number of criteria. Ian "technically" meets the minimum number of criteria, although the doctor here tells us that he has never seen a case of HLH without certain elevated antibodies, which Ian doesn't have.
I am feeling very concerned and extremely burdened because the doctors are not certain either way. The treatment for HLH is steroids and low dose chemotherapy. My understanding is that if he has HLH it would help him now and prevent further life threatening incidents like this, but in the absence of a definitive diagnosis, I feel sick about exposing Ian to those treatments. Please pray for wisdom and divine guidance for us and the doctors in this. Love to everyone."