The next phase begins

We’ve had confirmation that Pudding is now entered on the clinical trial. And he’s been randomised to the treatment arm. We’re waiting to hear about a surgery date sometime in the next few weeks.

I don’t really know what to say.

When I’m telling people they light up and tell me what fantastic news it is. And they’re correct of course. This is the best hope we have right now of stopping the progression of this awful disease and giving Pudding a chance of a future.

I think of all the boys who haven’t made it onto the trial and their parents who have been devastated by the withdrawal of this hope, and I feel guilty as anything that I can’t embrace this chance wholeheartedly.

But I also remember the pictures I have seen lately of other boys in hospital again after the spinal port surgery – those with leakage of spinal fluid or with a serious infection – and a pit yawns in my stomach.

Of course, we’ll still go through with it. There are many other boys who got through the surgery successfully and are in the routine of treatment. There is every chance that Pudding will be one of those. I’ll get used to it and stop worrying quite so much.

But until we’ve got through this next couple of months, fear will be sitting on my shoulder, kicking its legs and jabbing me into awareness every so often.

If I was a Christian I would ask you to pray for us, but I don’t have that faith to cling to. One of the first times of my life when I wish I did. Instead, I ask you to hold us in your thoughts – it means a lot to me.

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