Comfortable

Pads' bed is so comfy and easy to adjust, he's happy to stay there - wasn't interested in another trip to the caravan in Porthcawl when we suggested it yesterday. We certainly couldn't offer the same level of comfort out at Trecco Bay and so much time is spent in bed now. On Saturday, we said goodnight at 7:30pm and he slept, with only a break for taking the morning medication, until 3:10pm on Sunday. He's been more awake yesterday and today.
He's needed two lots of breakthrough pain relief this morning (90mg of Sevredol) although there's no indication that the needle is making the injection site 'unhappy', so the MDT meeting tomorrow may well result in putting the syringe driver dose up again.
I'd popped in to work this morning briefly for a IT lab 'drop-in' session. A conversation with a colleague in the library reminded me of why I enjoy my job but, starting my 5th week on a 'fit note', I was glad to get back home. There I made Pads a cuppa and played him Bob Dickie's latest 'vodcast'. Pads was especially struck by Pastor Bob's reciting of Mr Higham's hymn, Great is the Gospel of our glorious God, 'beautiful', he said repeatedly. We're all very concerned for Bob and Mary, his wife, as she's undergoing treatment for cancer at the moment. This is my compilation from when they visited last year for a fellowship reception.

More trips in the car

Making good use of the Motability car while we've got it, yesterday Pads ventured out to enjoy Star Trek 'Into Darkness', and today he went in the hot tub. The sub-cut (subcuticular or 'below the skin') needle which delivers analgesia needed taking out and a new one inserted in a different site. The previous site had started to go bad and he's still got pain and a big colourful bruise on his right hip from it. After an hour and a half with no pain relief going in it was great that Jane was able to drive to us at Ruth's and make the change. It was lovely in Ruth's garden and Padi's wit was spritely, even if his speech was slurred having become worn out by the excursion. We're getting used carrying him up the stairs. He's generally pretty awake between the hours of 12 and 8pm, but it depends what he's been up to.

Bare knuckle life

Thankfully Ally seems to be pulling out of the shingles attack although Pads seems more sleepy than ever. On Sunday night, after missing Chapel, which will have annoyed him, he was happy to drop off at 8pm without seeing anyone else, even including the Pastor who is one of his best friends. This is after having spent most of the day dozing and a very quiet week last week, with no school, no hot tub, he watched a film with the tutor, dropped off to sleep after Pod Clare's visit. I wondered if the increased pain relief meant he was more sedated but he's been on 62microgrammes of fentanyl for a month. At least he did not ask for any breakthrough relief on Saturday or yesterday. So we've booked Bluebells again for a mini-break before half-term-imposed separation (Moli to Spain, smalls to Cromer).
It is worth observing that Pads took a dip in spirits about this time last year...
We don't have the services of the psychologist currently, which may have helped (although LATCH are funding one due to start soon).
On current form it is hard to see much that will get him up, even at Bluebells, apart from the pool.
For a while we had been able to leave Pads with his siblings, but that's out of the question now. Apart from physical care, some kind of event, even if it's 'just' emotional, is more likely to happen that is too hard for almost anyone.
We believe the Lord is good, He makes no mistakes, but the unfolding of His will in this can be excruciating at times. Pads was reflecting that he keeps thinking he's going to wake up and be normal - that was a long time ago. Such a long time.
We know another young cancer sufferer who's been ill since Pads relapsed. A similar age, at the same stage, even on the same drugs. Both families see 2012 as year we didn't think we'd have, but with a threatening prospect for 2013. But at least Pads has a sense of the glory to come. It seems so unfair, people think and sometimes say. But life is brief and uncertain. We say not, 'Why me?', but 'Why not me?' This life is so short, hardly deserves to be called reality, just over in a flash. Some people's 'flash' is faster than others.
There is a place of no pain, no tears, no dying and that is a massive comfort. Even more of a comfort is that we do not for one moment think we could deserve this, far otherwise. Our hope is built on the good works of another. Because of the perfection of the Lord Jesus Christ, we can have confidence facing death, or indeed life.
We all might hope for some kind of triumphant end, but that may not be our lot. We've spoken to the siblings about not retorting to Pads' occasional uninhibited quips, as much for their sakes as his.
Only thoughts of glory can counter these thoughts. Paul, who knew all about suffering, could say:

For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; 2 Corinthians 4:17

God's will is best, but, as Christians we ought to be able to do better than some kind of stoic fatalism. Paul again: 'In everything give thanks' 1 Thessalonians 5:18. If we pass through times where we do not feel we can 'rejoice evermore' (1 Thess 5:16), yet we know we can wait on the Lord for it as His gift, and not possessing it, we remember the Giver and his goodness. 

Outlier

Pads is getting more confident about going into school. On Tuesday he did not want mum to even see him go in. The first word that he uses to describe it whenever I ask how it went is, 'Great!'. A few weeks ago he was waiting with a different friend than usual because the normal one was at Latin. When mum suggested this sounded rather clever, Pads mused that he would probably have been doing Latin as well but he 'did cancer instead', and proceed to 'laugh like a drain'! I think you had to 'be there'...

We've been focusing on BBC Children in Need over the last couple of days. Bo was singing in a thousand-strong children's choir at the Cardiff International Arena on Friday night. That evening's first Children in Need episode featured Padi's play therapist, Anne, from the Kids Cancer Charity. You can see a feature about one of the other children and the help she was at 47::40 on i-Player until next Friday. The feature quoted her time at £50 per hour and Pads has had very many of those over the last four years. Ally's met the mum of the little girl in the Children in Need feature at a 'pamper day' organised by LATCH.
Apart from the 'sufferers' support group Pads goes to, LATCH also organise 'Brain Tumour Support Group' meetings for the carers in the evenings every so often, these may feature talks by our consultants. The question and answer sessions at the end are an excellent forum for all in attendance, i.e. including whatever members of the multi-disciplinary care team that attend. Many carers were talking of their bad experiences with being brushed off by clinicians when trying to get a diagnosis, even when faced with far more obvious symptoms than Pads presented. The basic message is that probably you know your child better than any physician and you can get a sense when things are 'not right'. You also need to recognise when your reasons for suggesting the child gets a scan are unreasonably dismissed in spite of the status and position of the person getting in the way. Parents have even been referred for counseling because of their persistence. All the while, delay increases the risk that the pressure will cause 'brain herniation' or tumour metastasis (spread).
All that talk takes us right back to the start of Pads' illness. Our story is quite different these days. We now seem to be in the arena of 'long-term' side effects: our ears pricking up when the consultant mentioned radiotherapy-induced curvature of the spine. I couldnt recall hearing that one before but giving consent to something like radiotherapy can do funny things to your memory. After the talk, Ally asked the consultant straight, 'So is Padi an "outlier"?' (i.e. is the length of his survival rare). She confirmed that he is. We are all grateful for this of course, but there is no getting away from the fact that he is still ill. Today he did not emerge from his bed until 6pm, when the chip buyers returned with a small battered sausage for him. This he duly  devoured but it wasn't long before he was heading back up the stairs feeling dizzy and exhausted. 

Tired

Pads is just too tired to do much today. He did make an appearance downstairs at lunchtime but I've just swapped with Ally so that she can get to a service today as Pads is resting at home. He was also getting quite wound up with being itchy so I've administered a dose of piriton, and then he had a cetrizine too.
He came out to Bristol airport with me yesterday, to bring Ross to Cardiff to preach for us, so it was not an especially exhausting day. All part of the mystery of the ongoing situation...
As autumn progresses, thoughts turn to Pads' birthday. Kay from LATCH was quite adamant that they would be able to fund it.... Probably he'd like to do something with his mates from school, just need to think of what.... Even though things are sort-of settled into a sort-of normalish phase, we still need to keep an eye on the reality of our situation and enjoy the time, putting little milestones on the calendar.

Autumn leaves against brilliant blue sky in Heath Park today while walking doggies