Today we got back from the Daniel den Hoed Clinic (part of Erasmus Medical Centre) for a second opinion.

Cutting straight to the point: they share the same opinion as the medical team in Westeinde Hospital in The Hague, what basically comes down to: any alternative treatment will have little chance of success and will do more harm (side effects) than good. And ‘success’ is defined as a few months extra, but WITH side-effects (meaning: possibly feeling miserable and so tired that Syl can do no more than sit in a chair).

When you put it like that, the choice is sort of ‘easy’. Problem is, these are not facts, but expectations, based on a group of other people. Average, so to speak. But clearly Syl is no average, because the doctor was surprised how well Syl was doing; he clearly expected something else based on the dossier. Endorsing Syl not being average.

The problem is, where lies the difference between being persistent and being stubborn? How long do you keep searching for alternative treatments, and when do you start accepting the situation as it is and continue making the best of life for as long as we are given? The doctors do not KNOW that Syl is better off WITHOUT treatment Syl. But then again, we do not KNOW Syl is better off WITH treatment. Doesn’t blaming the doctors being stubborn, makes us just as stubborn? I don’t know and I think we need some time to figure this out. And we will eventually. I’m sure of that, because we always do.

What matters most in the end is not ‘how long did you live’, but ‘what did you do with your life’. And it makes me very happy to realize that where we are very limited in influences the length of our lives, we have full control over what we do with it. And we’re not going to give up that control. Ever!

Thanks again for your loving and continuous support!