(Another) new plateau

We had a torrid time a couple of weeks ago trying to keep Pads pain under control and eventually moved to the syringe driver as opposed to fentanyl patches. This move was foreseen and something of a Rubicon in everyone's minds, not least Padi's. He worried that the device would hamper his movements. In fact he has continued to be able to enjoy the things he did before and he has mentioned wanting to do more. Quite how that could turn out is hard to picture, but he did get to church on Sunday night and was in the tub on Monday.

People who are very ill often 'come and go', to the astonishment of those caring for them or looking on. He had a lovely letter from the the Head of Year 10 and SENCO yesterday. He'd already mentioned school earlier this week; last night he descended the stairs with the express intention of using the Wii-Fit game (involves standing on a 'balance board'). This turned into a less improbable Wii Sports Resort session with Asher. Ross and Amy arrived from Scotland having been briefed by Rhys on the way from the airport not to expect too much and imagine their surprise when their first sight of Pads was of him doing something completely normal!
It is certainly typical of Pads who, over the last five years, has seemed to be spiralling downwards only to level off and continue on that plane for a while. Who are we to stymie his ambitions?

Meals and visits

Pads didnt make it out to church at all again on Sunday so it was great to see Pastor David and Ruth Kay yesterday. They were up visiting  from Whiddon Valley, Barnstaple for the Christian Worship Committee (get your CW Camp form in now!) and caught Pads downstairs - a rare sight! He'd been watching 'Band of Brothers' with the tutor. They had a lovely time together.

The day didn't stop there: we also had a visit then from the gastrostomy nurse who changed Pads' mickey button as we had reason to believe it was faulty. Padi was brilliantly calm for this, considering how strange it is and how distressed he was the first time this had to be done. 

The nights have not been too bad since last Friday. We have needed to give a few doses of breakthrough pain relief today though. Asher donated his handwarmers which provide a level of relief too when applied to Pads neck. 

We've been grateful to receive several delicious evening meals from friends at church which eases the burden, particularly on Ally. I've also obtained a two week 'fit note' which means that I can work from home without feeling obliged to go in to the office and I can fit work around events at home. There's plenty going on! Ally's currently preparing the back room for Pads. It is larger and will make looking after him a lot easier, as much as he likes his corner of the study!

People often ask, 'how are the others?', and I've been reluctant to give an answer because I'm not very confident they would share fully with me as a parent. This means creating appropriate space for them to express themselves and we've been taking advantage of the professional help available. The boys are looking forward to another 'Over-the-Wall Siblings Camp' in half term and that is very much geared up to supporting children in their situation. 

Sadly, it looks like Pads is not going to be well enough to go to Ellen MacArthur this year. When we told them he won't be able to come they said they'd send him a memento to show him that they are all thinking about him. 

Ash alone to Inverness

I'm sorry not to post more often - it's the usual thing of finding the time and the words. In the gap since the last one Asher's been to Inverness and back on his own.
It started as an idea to boost Matthew's birthday celebrations but we were getting frustrated in the planning because Asher's only 12 and so can't fly on his own and the coach will not take anyone under 14 on their own. There are no such restrictions on train travel. He was very keen, with the condition that we would try and minimise changes. Plan A was to take him to Bristol Parkway so that would mean just one change in Edinburgh. But the sat nav led them to the middle of a housing estate 5 minutes short of their deadline so he missed the train. The station staff were very helpful but now he was faced with 3 changes! The journey started with having to stand all the way to Birmingham and then, in a mistake about the 24hour clock he got up too early and lost his seat. Then the train from Carlisle was 20 minutes late and he missed his connection. leading to a 90 minute pause at Edinburgh. One of the trip's highlights was when a station café waiter took pity and got him a hot chocolate 'on the house'. His normally abrupt text message style changed somewhat went he finally arrived at Inverness at 11:30pm, 'I am drained of all energy' he said.
It was not as if this was his first long trip on a train without his parents. He's traveled with big sis previously from Cromer to Cardiff, for example. But being alone is quite different. Thankfully the return journey went very smoothly. He's clearly enjoyed being away and being back with us. This morning he was helping put Pads' dosette box together for the week. Pads has had quite a lot of breakthrough pain (usually requiring 4 400 mg fentanyl melts per day) and the nights are disturbed by trips to the loo which we have to supervise closely. The consultant has mentioned a syringe driver previously and we may well be nearing the time for that. We are so grateful for a period of holidays when the pressures of school runs and maintaining full attention on (my) work can lift for a while. After a disturbed night, being able to lie in a while does make a huge difference.
The photo is a section of a letter which the SENCO organised to alert Parents of Pads' close circle of friends to a change in his condition and steps that the school were taking to safeguard the well-being of all involved. We're really impressed at the way Glan Taf are dealing with all of this. 

Pads has not really got downstairs very much this last week. He was able to go to the hot-tub on Thursday and popped down for a family film last night. We're trying to avoid placing expectations on him as he's always been one for trying his best to please his parents but that is getting increasingly hard as things progress.
I was trying to explain how we cope to a nurse the other day. Often it is easier to pass it off as, 'Oh well, everyone has hard things to deal with', when people ask, especially if there's not much time or the person does not seem to have sympathy with the real answer. In fact, as Mr Higham has said in this remarkable hymn, 'Deep in my heart there is a sigh' (full version on the WV Higham Trust Website):

There is a fellowship of pain
Deep in Thy heart of love,
O suffering sweet, eternal gain,
The tears of heaven above.
O grant me, Lord, to feel this joy,
These tremors of Thy grace;
Engraved by Thee, none can destroy
The riches I embrace.

This is especially poignant at Easter, when we remember the sufferings of our Lord Jesus Christ, the Lamb of God. His passion was abjectly abysmal, yet it opened heaven to sinners. The usual thing is to shun pain and death as only bad. The media regularly treats death as the worst possible outcome. Yet these things are the path of blessing for Christians. We prove that God's grace is sufficient: "for my strength is made perfect in weakness." Paul even says,  "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2 Corinthians 12:9) And in another place, Paul's great ambition was: “That I may know Him, and the power of His resurrection, and the fellowship of His sufferings, being made conformable unto His death.” Philippians 3:10

Taking the bus

It's Asher's birthday today and, although the weather prevented a beach party, they're off to Ruth and Rhys's for a hot tub, an owl viewing and a burger. As we're a single car family now, and that is full of lads, Moli and Pads have caught the bus. This is the same route I used to commute from Miskin to Canton back in my time working for Barclays. Pads is in good form. He was willing to have the grand opening of the presents happen in his room fairly early. One of these is a Raspberry PI (see picture with the complimentary extra large tee-shirt that wouldn't fit anyone but me :), the source of quite a lot of bemusement. They all knew it was a computer but Pads wants to know 'but what does it do?' That's for Asher to discover :)

Pads at Paignton

We had an option on a holiday in Paignton, through a network of hotels that offer breaks to families in our position. In the event they couldnt offer us anything in the school holidays, the kids having missed a couple of weeks already. But Pads was up for the trip and so I was keen for him and mum to take advantage. It was a fair way to travel but they made it in good time yesterday. Pads likes his bed these days and cant be left for long, especially not in unfamiliar surroundings. So it was terrific that Pastor David and Ruth Kay were able to travel down from Barnstaple to visit them this morning. I think I heard that Pads was beating Pastor David at chess on the i-pad!

 The hotel at dawn this morning

 Pads at Paignton

This is a week of travelling, with Moli away to Scotland for work experience with Christian Focus Publications. We're very grateful to Catherine McKenzie for taking Moli on and to Ross and Amy for putting her up. I was helping with the PA at the Birmingham Conference last Friday and Saturday and then I'm off to the Netherlands for a conference next week. Asher is eagerly anticipating a trip to Newtown after the holidays. He's been practicing with Whitchurch Hockey for years but misses out on games because they insist on playing on the Lord's Day. Last week we heard the school were in a tournament in Swansea. Ally phoned and the next day Ash was scoring goals for them - including two in the final - which they won!

Will power

Boaz has been performing lately, Asher too in his Eisteddfod. Boaz did that but also was highly excited to sing with his friends at the local eisteddfod and really enjoyed it. Last Friday he was at the St David's Hall singing with the same friends at a concert to raise money for Banardo's. Earlier that day, Pads wasn't up for going to the clinic - too tired. But it enabled Ally to have a good long chat with our consultant.  They had a look at the CT scan from the week before. It showed that there really is no further swelling. However, just from the way we're now talking about him, she could tell he has been more tired of late. Yesterday, in spite of spending Friday and Saturday in bed, he was feeling rotten and it took a monumental effort by him to get up and dressed and out to the evening service.

Then he was in good form again,enjoying the sermon and fellowship afterwards.

The doctor was talking about reviewing the treatment, as 12 cycles is a natural point at which to do that and we're at number 10. There is no telling what might happen if the oral chemo (http://en.wikipedia.org/wiki/Temozolomide ) was stopped after that, but with Pads wanting to go on the Ellen McArthur trip again, that would take him up to 14 cycles... We're skirting the fine line which defines 'quality of life.'

Back to School, or not

Asher and Bo returned to school on Tuesday. We're all very keen to find out how their new situations are treating them: particularly Asher, who started high-school at Glan Taf. The school bag he chose (Trespass Eldorado) is attracting some interest: a rucksac/carry-on suitcase cross, complete with wheels and extendable handle that some have laughed at. When they are being crippled by over-weight luggage he'll be able to wheel his along with ease. Things are a bit slow for him this week but we agree its good to settle in gently. He's in top set for everything so that should keep him out of trouble when things get going!
We're in a strange phase of this disease. The summer has ended and Pads cannot contemplate going to school, which is fair enough. Even quite mild events drain his stamina. Today he's recovering from a day of film. His cousin Llyr is shortly off to Birmingham having done stunningly well at his A'levels (AAB). So a Lord of the Rings cycle (3 films, 4 hours each) was organised for his mates and Pads got to tag along, so completing another item on his bucket list.
 
It was great to meet up with Kay, our LATCH social worker yesterday. She's going to write to our lender to see if they'll give us a payment holiday and LATCH will make a limited contribution towards utility bills. She is keen to organise further events for Pads, no matter how small (knowing him!), including venues for the family to go away together. But we're actually fairly 'tripped out' and the boys are enjoying school. Moli is somewhat dreading Year 10 though, which threatens an even bigger workload than previous years. Sadly, The Joshua Foundation flat in Fishguard that we'd enjoyed previously is permanently unavailable. Damp and rot has set in making it prohibitively expensive to put right. The property was gifted to TJF and so they are unable to sell either.
We're making progress investigating clomipramine, the drug I mentioned the other day after a friend mentioned a Radio 4 programme about it. After listening again closely for any names, I eventually found Ian Phillips on Twitter, who talks about how the drug appears to be helping him. He lives just down the road and is raising funds for the Samantha Dickinson Trust (link to his justgiving page). This charity has funded research into clomipramine and is pushing for proper clinical trials amongst brain tumour sufferers. Ian confirmed his consultant's name, whom Ally knows well from Velindre and who organised Pads' radiotherapy. I keep having visions of tumour cells dying in the petri-dish, as described on the Radio 4 programme. While there are any number of complicating factors, it seems worth a try. We hope Pads consultant can find a way of getting us there. One of the drugs he's on at the moment is from the same family as clomipramine but Pads is getting it for pain relief benefit. We have to be sure that the new drug will not interfere with the finely honed brew he's currently on - temozolamide, amitriptyline, phenobarbital, hydrocortisone, ondansetron, paracetamol and not forgetting the fentanyl patch and nightly feeds.
I hope this post goes somewhat towards pleasing those who would like me to write a bit more here. Blogging does punch quite a hole in ones day - just as well I'm still on 'fit note' leave for this one.
Clearly I can't write publically everything that happens. I have thought about setting up a subscription-only blog but its easier to just say if you want to know more, please get in touch. :-)

Patchy

We were delighted that Pads wanted to visit the seaside yesterday with the youngsters from church. The tide was in at Southerndown's Dunraven Bay so no-one could go far down the beach or get up to much on the rocks anyway... It was warm and sunny - a rare occasion! When a few of us gave up on bathing in favour of a game in the lovely walled gardens, we ran into the young people from Met Tab who'd been worshipping with us on Sunday. They have a house-party in nearby Dinas Powis the same week as our conference. We approached this week with some trepidation about what we'd be able to attend. Now that the 'live video stream' is up and running we can view the whole thing from home. Pads was aiming to get to the evening meetings but had to pull out of Monday night because of a pain spike. Then he surprised us by coming along yesterday morning and staying to help with the CD duplication, as he had last year.
In other news, he's now having 2 fentynal patches (from Saturday) and regular paracetamol.
The photos of the Ellen MacArthur trip have been published on their facebook page. For example, this is one of him with two of the people that made him want to go back and do it again so badly: George and Starr. We're so grateful that he has such warm memories of the time with them. Sadly, there's no room for him to go again this year, but Dan reassured him that the things he liked best about the trip he'd get on the 'Over the Wall Camp' in August.
Finally, in case you hadn't noticed, Asher's been raising money for the Christian Lewis Trust through a sponsored haircut. Last night he was saying he'd like to top £500 on the justgiving page (currently £481), when Ally was playing an answerphone message from the head. They'd counted the money received as a result of a letter about the haircut and a collection at the Year 6 show and it amounts to over £800!

The deed has been done

Still time to sponsor Asher ;-)
http://www.justgiving.com/Ashertorrigwalt2011