"Mildly Alarmed"

Hello... It's been a while, I know but I (daddy) have not been around to know all of the details so not much factual that I can add while away on training.

So... Today there was a family meeting with the doctors regarding Willem's situation and I now have a lot of facts that I have yet to absorb. I will probably not absorb them; I will probably just float on top of them for a while and hope to hit dry land at some point soon.

In summary: the 2nd of 6 genetic test came back negative for the familial form of HLH. This would be cause for celebration were it not for the fact that Willem has not responded to treatment as well as the doctors had expected. Willem is showing no sign that it's familial HLH that he's battling but he is responding to treatment as though he has the familial. It's all very technical and I just shut down mentally -- I got the gist of the conversation: it's serious.

Willem is also dealing with the damaged intestines that are not letting food pass through his entire GI so now he will be getting some serious and pretty invasive surgery on his intestines to bypass his damaged areas so he can, we pray, eat real food again some day soon (months). After the surgery he will be getting a bone marrow transplant but more on that later.

The risks and concerns: Willem is still on chemo because his HLH is still there and fighting to stay. He will have to be taken off chemo for a little bit so that the surgery can be done and he can heal. It is a delicate balance of time and healing that will have to take place so that the HLH does not make an aggressive comeback while he recovers from the surgery.

There's more to say but I shall leave that to future postings. Willem is a medical anomaly and is now known globally; something that comes with the added benefit of the greatest minds working on a singular task and with the added negative that, so mysterious is his illness, the greatest minds are working on a singular task.

In summary? Well... PRAY. Cross your fingers. Send good vibes. Visualize purple energy.


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THANK YOUS
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HUGE Thanks to the Branders for their very generous donation to Willem. Thank you. And a big thank you to Noreen as well. Thank you.

Thank you to all of our wonderful friends and family members who continue to express no limit to the sacrifice they are willing to make to help us and Willem. Thank you all.