Upshot of consultant visit

We enjoyed a long chat with the palliative consultant yesterday. We discussed various aspects of Pads' antics and health. One of the questions that had been on my mind is whether increased doses of pain relief will result in a more dopey patient. At this stage, increased sleepiness is due to tumour activity rather than the already high levels of analgesic. At the moment we are on another plateau where the pain is under control unless something else is going awry, for example, he needed a dose of breakthrough last night. Today it looked as though the injection site was starting to get inflamed. This will reduce the effectiveness of the site's ability to absorb the drug. So the needle, having lasted well for a week, was changed this morning and hopefully that will keep him comfortable again - so far so good.
If you're PEG/liquid fed for years, apparently, this can make your bowel 'lazy'. When we were at the caravan in Porthcawl recently it was clear enough that the Jevity was not agreeing with him and so we abandoned the nightly one litre 'complete diet' in favour of letting him eat whatever he wanted. That amounted to everyone's dream diet of (MacDonalds) donuts, battered sausage (from the Fisheries chipper, Birchgrove), KFC pop-corn chicken, popcorn (salt), naan bread, Moams, chocolate and, last but not least, sweet tea. Of course, this is a bit fatty and that had started to disagree with him too. So, with P's agreement, we're branching out with a return to some old favourites: banana bread (mum's non-fangled recipe), scrambled eggs on toast (made by dad), Cheerios, dried apricots and Shreddies. It is hard to over emphasise how significant a factor diet has been for the whole of his treatment. Tonight he also managed a lump garlic bread and a lump of chocolate.
Pads has had a steady stream of visitors again this week. Today we were delighted to welcome the Mrs Highams who were chatting with Pads about the need to challenge the young people about their souls with the question, 'are you saved?' There can be too much 'pussyfooting' when the need is urgent.

Consulatation and two bags of blood

P continues well.He did dip a bit: once on Wednesday night, when he felt tired early evening and then last night when the PEG hole was giving him some pain as he cleaned it...., 'oh I wish this all hadnt happened' sort of talk. In both cases it didnt take very long to be back up and bouncing, but it's hard to know what to say sometimes in the midst of these troughs.
After giving a blood sample, P went to the play room and the parents were asked to give consent to the next rash of treatment. His counts are too low to be starting this Sunday, so it'll be from the 15th. He will get the first dose on the Monday. There are three days of a 3 hour infusion of Carboplatin, and then three days of two infusions, 3 hours of Thiotepa and 3 hours of Etopaside. By the end of which he will probably be in isolation. Three days after that, on the Tuesday following, his stem cells are given back (an autologous transplant).
The blood results came back showing he's coming up on the neutrophils (0.7 - anything above 1.0 is good), HB was 7.3. This triggered a blood transfusion. Two bags started at about 7:40pm last night, finishing at midnight. We were in his least favourite room (bit claustrophobic) so he was strongly inclined to stay awake and go home to bed. Thankfully the transfusion passed without incident and now he's in good shape for a few days of normality, we hope. Having said that, he's currently in the Dental Hospital waiting for someone to pull an infant molar. The adult tooth has erupted beneath it without successfully pushing the smaller tooth out and it's locked in place. Our dentist had warned that this tooth could easilly cause infection if it remained or came out during chemo.