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No chapel last night for Pads - lacking 'oomph' at the critical moment. He's mainly comfortable although has hardly been out of his room since last Monday.

LATCH have done it again! Pads now has a 32" telly - modest (by today's standards) and yet adequate for shared viewing of all kinds of things, whether it's photos, a movie, or BBC i-player. There's a great new series on at the moment about Australia, somewhere that's always fascinated Pads. The other day the boys were having great fun watching some old home video together, like this one from 2006:

They had to break off a 'Les Mis' session on Friday though as Pads quickly tires after 8pm and he was getting some strange pains which we're now putting down to long term steroid use, manifests as a kind of reflux. So we're breaking up Pads' tea drinking with some milkshake and an increase in the omeprazole dose.

The need for feed

After a bit of a trial last week, and we've discussed it with our nurse, we're putting Pads on a 'see-food' diet. Basically the Jevity (liquid PEG feed) was not really agreeing with him. So tonight it's another battered sausage for tea! The only thing we have to keep an eye on is the fluids.
It's been quite busy in the house with Ann, the play therapist visiting (and getting soundly beaten at Uno), the tutor (who watched some DVD with him), and Jane, as well as a few others. I was buried away in some urgent marking most of the day.
We've been taking quite a few calls and messages following the update I posted on Saturday night. Thank you for all the interest and concern!
Thankfully the pain has been kept at bay so that he's not needed any more breakthrough pain relief and we have plenty in stock in case it does come back. There will be another 2 days of this dose of steroids and then he'll have to be brought down off them in steps again. So he's thinking positively about going to 'Hanes' (History) on Wednesday and even the LATCH Brain Tumour Support Group meet on Saturday afternoon.

Oramorph

After 6 melts in succession were not really quashing the pain, we contacted the nurse on call who came back with switching to 30mg of oramorph and increasing the fentanyl patch to 125mcg. Oramorph is no stronger than the melts necessarily but acts in a different way, in case the melts are no longer effective.
After the oramorph wasn't effective either an hour later, another call to the nurse allowed giving another 30mg. That only lasted a short while and so another 60mg was given. By 7.30pm he was ready to eat his battered sausage.
We're slightly nervous about the night. The registrar is suggesting boosting his dex for three days. If we have to give continued oramorph overnight we will be getting back to the nurse as they can call on an emergency pharmacist to make up a syringe driver with diamorphine. Hopefully that won't be necessary. Please pray.
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All home

Moli's came back from Spain last night and the smalls returned on Saturday. Thus ended a quiet week. Pads did not think it was particularly quiet though, with trips out most days.
The day after coming home from Bluebells, Friday the 8th, we welcomed a colleague of Mike's, another Jane, to the house. She's working on a doctoral study into decision making in teenagers with cancer. Pads seems really taken with this - regularly marvels at how important and helpful this could be. If you think you could help, I'm sure she'd be delighted to hear from you. The ideas are evolving so, although it says 'treatment decision making' on the Cardiff University contact details, I think it's all decisions she's interested in. For example, life planning, Pads will probably never be able to choose to emulate his sister and pop off to Spain... The following day, Saturday, unusually, we'd joined Pads for a long wallow in the hot tub, where conversation soon turns to matters of moment. Pads worries about what he'll do for a living, if he lives... how he'll contribute to society. He doesnt want to be a 'waste of space' - this kind of thing comes washing back every so often. It's not for the faint hearted. All I could say was that many 15 year-olds have the similar concerns. I recommend meditating on Matthew 6:33 'seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.' or Proverbs 3:6 'In all thy ways acknowledge him, and he shall direct thy paths.'
Apart from the at the restaurant on Wednesday, he's eaten something most days: enjoyed three pancakes on Shrove Tuesday. On Friday we saw 'Life of Pi' (an awesome spectacle!) before motoring out for dinner with friends in Cwmdare.
The steroid dose is now down to 4mg per day (from 8mg). He took one lot of breakthrough melts yesterday and did not make it out to church, but so far the symptoms have generally been keeping quiet.

'Life of Pi' portrays the real menace you would feel if trapped for weeks on a lifeboat with a tiger

Off to Bluebells again

With the return of some nasty spikes in pain last Thursday, the decision was made to bring back the 8mg dose of dex (steroids). This feels like something of a Rubicon. Apparently he's going to be weaned off steroids next week. 

Whatever, Pads went out to Ruth's for a hot tub during the day and then went to Friday Fellowship in the evening. At one point I thought he was going to doze off and head for the floor Mr Bean style. But he stuck around and enjoyed the meeting. Saturday was another pain-free day, apart from the first half of the Wales game. Yesterday he was out again in the evening to hear a really excellent sermon on 'the Prodigal Son', which, however much heartache we've experienced, 'prodigal' is thankfully one thing he's not. After weeks of anticipation, today they've gone to the Bluebells holiday flat before the family separates for half term.

Back on the dex

Pads pain and lethargy after the day at Heatherton were not that surprising although the pain was a worry. He was ill shortly after having all his morning meds too so we didn't know where we stood. At least this cycle of chemo (temozolomide) is over so that makes the drug round less complex, and his blood count might improve from the HB of just 10 it was the other day.
Eventually Ally phoned the ward and the Dr advised starting a course of steroids. By 5pm he was wanting to give the evening service a go and he tottered from the car to his place in the back room. By today the Dexamethasone had really helped: Pads was up quite early, keen to visit Auntie Ruth's again where he's spending the night.