PICU Update

     Not long after the previous post, Ethen's condition worsened considerably. Even on the ventilator the oxygen saturation in Ethen's blood dropped to a dangerous level. Shortly after seeing his oxygen saturation decrease so rapidly, his blood pressure declined to an unsustainable level. This was worsened by a difficult conversation with the lead PICU doctor. He informed us that the following hours would be critical for determining Ethen's trajectory. We were on the verge of tears, or in tears, for most of the afternoon. We really were uncertain what would happen to Ethen today as we waited by his bedside. We prayed and waited.
     Though we were concerned about capillary leak syndrome earlier in the day, we believe that Ethen developed cytokine-release syndrome, which is another side effect of antibody therapy. This explains why the increased oxygen input was not helping Ethen even though his lungs appeared to be dry. The cytokine-release syndrome describes the flood of cytokines and other immune system cells that enter the body to attack the targeted cells. Though this fulfills their desired function as pertains to attacking marked neuroblastoma cells, it resulted in chaos for Ethen's blood vessels, which couldn't keep pressure, and for his lungs, which became the target of the immune system cells because of their inflammation. We thank God today that trials have been conducted and that drugs have been tested to counteract the side effect that Ethen had today. The oncology team decided to treat Ethen with one of these drugs, namely tocilizumab, an antibody that can inhibit IL-6, which is an immune response stimulant released at sites of inflammation. There are dangers. With IL-6 inhibited Ethen's immune response is compromised. Please pray that Ethen does not develop any infection of any sort anywhere. Right now he is stable. He's on the ventilator and various medications. Pray he can rest and recover well.