Thursday, 15 September 2011

Keep It Up …

Adam continues to do well. He is a different child compared to the first round. We know, because we’ve seen it ourselves, that even on morphine children (generally) fare better after the first round. However, if it wasn’t for the fact that Adam was connected to his pump stack he’d be almost indistinguishable from his normal self. Actually that’s not strictly true, he is more short-tempered than usual (to the point of throwing things across the room once or twice), which we are attributing to the new pain meds. We have an ultrasound later today to check for fluid, but I don’t expect they’ll find much, if anything. Talking to the doctors they might even start trying the gabapentin during the first cycle in future. Not having to use morphine for pain relief alleviates so many other problems.

Our careful planning has really paid dividends this round. In the words of John "Hannibal" Smith “I love it when a plan comes together”. Even more so given that for (the second week of) round one it was mostly a waste of time. Getting a portable fridge/freezer allowed us to bring more of the organic foods that Adam eats at home, as well as four more cartons of fresh goats milk (which still hasn’t been quite enough). Having used it as a freezer for the trip and first week, we’ve now converted it to a fridge that lets us store a lot more fresh produce than we could possibly fit in the hospital fridge (at least not without becoming very unpopular). And what’s left of the frozen milk and food is now in the hospital freezer. Sorted.

Of course I have no idea what, if anything, this treatment is doing to Adam’s disease burden. Probably very little to what we know is there; the hope is it’s killing NB we can’t see, and what we can see is no longer important. And yes that is as crazy as it sounds, I know that. We are planning to re-scan after round three as part of the treatment protocol. However, since we got back from the first round Adam has complained from time-to-time of tummy ache, mainly at meal times, and most often during breakfast. It’s a throwback to the bad days before he was diagnosed, and we may need to do some further investigations sooner if it carries on. The fear, of course, is that there’s a neuroblastoma related cause. It’s a fear that comes with every ache and pain, but this one has persisted for too long now – although the coincidence with the start of immunotherapy treatment, and Adam contracting pneumonia, provide other very plausible explanations.

On a lighter note, here is a photo of the happy little chap playing on the ipad this morning

P.S. Only one more IL-2 injection to go and then we’re done with them for this round!

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