On decadron and VP 16. Ultimately doing the transplant sooner. IO2 receptors lower and ferritin levels still high. HLH in the duodenum and Willem not adequately responding to the treatment. There will be a transplant conference on Monday and the consensus is that there's no reason to wait because the surgical anastomosis is healed.
Willem is very hungry and crying a lot -- exclaiming that he just wants something with flavor. Angry that the doctors cannot seem to make up their minds and that they need to hurry up and do something. It was a fight to get authority to allow him to have sips of water.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
We're keeping you guys in our prayers and I have lots of friends praying for Willem as well. Let us know if there is anything we can do besides pray.
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