Still being ventilated. Vitals are strong and, apart from his entire GI, his organs are getting better. Willem is extremely strong and stoic.
The scope found that there are red spots in his stomach that are unfamiliar but malignancy was mentioned. There are a couple large -- I can't think of any other word than "bubbles" in his stomach also of unknown type. Willem's entire colon is infected, inflamed and, unfortunately necrotic.
We have been assured that there is plenty of hope as his brain, heart, liver, and kidneys are strong; his lungs need some help yet but with all that doing well he can still fight and recover from this.
Willem will remain on ventilation and sedated for a little while longer as it is helping him rest. He will be sedated only enough to stay sleeping but will be able to respond, physically, to external stimuli e.g. a finger pull, etc.
We are hopeful. Thank you all for your prayers and concern -- you have been a great help to us.
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.
Tom, this situation is surreal right now. Amazed a young, happy boy can be in this situation within a week. I am sending you positive thoughts and prayers that they will get to the bottom of this. And sending you and Erin strength to get through. Happy Birthday Willem! Much love to you guys from Santa Fe... Tracey
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