A lot of information today but I'm going to try and summarize it as much as possible...
Doctors are saying that they're seeing some signs of improvement. However... However -- there's always this "however" -- the bilirubin in Willem's liver is at 8+ and getting worse. Also, Willem now has VOD (the link will say it's a side-effect of stem cell or bone marrow transplant and Willem has had neither) which means, basically, the blood in his liver is now flowing the wrong way.
We have been offered an experimental treatment for VOD, called, "Defibrotide" and we accepted. Willem is now part of a Human Research Study and they will be using a medication not yet FDA approved in the US but has been approved in Europe. If it works, we will know somewhere between 48 hours and 7 days, depending on how advanced Willem's VOD is.
Thank you Kelly for the card and gift certificate for Willem. To think that a person, whom I've not seen in 25 years, came to the hospital to deliver this heartwarming message to Willem, and in effect, to us, is an amazing concept. Thank you again Kelly. Wow. I cannot wait to tell Willem about all of the wonderful people who have taken an interest in him.
Thank you Peri for your visit today -- glad you were able to get in this time.
Thank you cousin Tony for the call -- you gave me some relief.
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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