PT a no go this morning. During the pre-walk exercises Willem said that he needed a break, reached for his water, and threw up before he could get a drink. He threw up about a cup of the usual green goo (bile) so no PT until this afternoon.
The Hematology/Oncology (HemOnc) team thinks that, because his whole GI system is still inflamed, he is still in a lot of pain which would cause the stomach to react unfavorably to exercise. Willem will now have a continuous flow of morphine going in to him which should help him with the PT as well as any swallowing issues.
HemOnc team have decided to add Cyclosporine as part of Willem's therapy because the team is eager to see more progress faster. Cyclosporine is usually used in transplant patients but success has been found in using it in HLH treatment as well. Side effects: hair growth is one... Now picturing Willem with a mustache.
The HemOnc team still wants to move forward with the swallow study because they fear that Willem might be at risk of aspiration pneumonia and they're eager to rule it out via the swallow study. I just hope Willem participates.
Resting now.
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.
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