Are you saved?

It's arrived!

2012-01-31T21:56:00.000Z

Pads finally has a chick-fil-a calendar to fill-up that space on his wall - thanks to Renie & Joe, cousins over in Pensylvania. Just one day of January to enjoy, it arrived this morning and caused a lot of hilarity.
Before this we had the task of scraping Pads out of his bed so that he could get to the hospital and have a special blood test, for cortisol levels. He just about made it in before the deadline of 10am, after which the readings would not be correct.
Apart from a good chunk of the afternoon in bed, having 'chased' Reuben around the house before-hand, tonight he was up for another game of Bohnanza!

Bruce Airhead strikes again

2012-01-30T21:51:00.000Z

The parents went to meet the consultant on Friday. We were able to express our concerns that Pads gets quite low moods betimes and perhaps seek further help for him. Saturday was a case in point, something of a repeat of the week before. I was making myself unpopular by challenging him to do something (anything) but he was countering each time with a negative take on things. Eventually I told him to get dressed in order to go to the LATCH party. LATCH was celebrating its 30th anniversary and Dan, the LATCH social worker who'd accompanied Pads on the Ellen McArthur trip last summer, wanted to see us all there. In the event, A and M were otherwise engaged, but Bo was very much up for one of the limo rides on offer and was soon being whisked in and out of town. Pads was still sitting in the car. Eventually Ally managed to persuade him to enter the building, quite a major step for him, and each step was made looking firmly at the floor. Providentially, the main throng of kids had removed from the play therapist to the stage for a group photo and so Pads had a clear line of sight and her full attention for a while. Every child and their family was there, even from off the wards. Pads also met Dan and a member of the play team he knows. The whole time he wouldn't look up. Thankfully he was brought out of his shell when one of the entertainers played a card trick with him. From that moment on he relaxed and had a great time: decorating his crutch, watching the acts, chatting to various adults he knew.
The conjurer was clever, the balloon artist was talented, but one act will not be forgotten:

I don't know

2012-01-25T22:53:00.001Z

Pads has been spending a lot of time in bed recently. Towards the end of last week it was even getting him down, he was even getting fed up of his entertainments (i-pad, mp3 player, DS). By Saturday he couldn't give any other answer than, 'I dont know'. With that, mum got him dressed and suddenly he was in the car. I'd just about finished cutting my hair and needed Ally to give it the once-over but Pads was in situ but thankfully I'd done a reasonable job. Before long Pads was in the 38 degree hot tub at Ruth's. He stayed there until it was 36.5, somewhat marooned for the last ten minutes, and that 1.5 degress makes quite a difference - not least with a keen wind blowing down the garden. I'd been impressed with his ability to 'hurdle' into the tub, getting out wasn't a lot different except that he asked me to carry him down the garden, over the slippy slabs and steps to the house. At 42kg, he didn't present too much of a problem.
On Sunday, Pads was in a high mood, almost irrepressible. At times like this it is wise to keep the tummy tucked in, because nothing pleases him more than catching me off-guard with a flashing finger to the midriff.
The days of this week have passed on without incident really. On Tuesday night he was surprisingly easy to coax downstairs for a 2 hour game of Bohnanza with his siblings, although Moli had to get on with homework after 7:45pm. On Wednesday, Reuben was in town for Toddlers at Tabernacle. He made short work of pursuading Pads to get up to play with our ancient set of brio trains. Pads would really like to meet Reuben's new sibling, due to arrive in a few weeks time.
These kinds of 'good times' make life worth living.

Worth it

2012-01-17T20:11:00.001Z

In order to lever Pads out of his cosy bed today, mum had invited Pads out on a 'date' to see War Horse. In fact, Pads was wide awake at 11am and stayed that way although was unlikely to make the trip downstairs without further incentive. Ally is really not a fan of the cinema, although a DVD is about the only thing that'll get her sitting down for any length of time at home. But it was worth it. The new St Davids 2 complex allows them to park just 50 metres away from the city centre cinema, the tickets for which she'd pre-paid for with Tesco vouchers.
They both enjoyed the film: mum cried; Pads says he 'shouldn't have read the book first because there were gaps, but otherwise it was good'. Sorry I cant evoke a more detailed review than that...
I pointed out to him that the author, Michael Morpurgo, doesn't mind at all that the film is not identical to the book (in this youtube video).

On record

2012-01-14T03:38:00.000Z

Have done some more thinking about the radio programme we're planning. We've also been talking to the team about it. In some cases it can become a bit of a pandora's box. We're reminded that some people make a living by publishing news stories. Apparently some less worthy journos are known to scan obituaries for mention of children's cancer charities and the next thing they're knocking the door of the home looking for an angle. Our man from Chwarel is a gem though and the whole process is designed to be as unobtrusive as can be. Even Pads has said he's looking forward to seeing Ian again. One hopeful outcome of the recording would be to help others find a way through the terrors of cancer. Some parents of cancer kids decide to hide the illness from their children, even the one with the illness. Perhaps this is some kind of bid to protect their innocence... Although it is tough for anyone to live with such a disease in the family, it's only a reflection of what happens in this fallen world. Some parents go to great lengths to replace deceased pets while the potentially bereaved child is out of the house, but we've never taken that approach.
Apart from the way we've coped, another angle of general interest is the length of Pads' illness. This is an emergent trend with enhanced therapy.
Pads mates generously gave him some i-Tunes vouchers, since he now has an Apple device. Last night he finally got around to choosing something, that was proving tricky because he's no fan of the current music scene. The only item he'd landed on was some John Williams movie music that we already have. He'd looked at films to purchase, but we were both surprised at how little choice there was. Anyway, since he likes film music, it seemed like a good idea to go around the store picking up individual tracks and so he spent a while on that project.
The Christian Lewis Trust play therapist returned on Wednesday. Pads was keen to see her and, as usual, they had a 42 deck game of Skip-Bo. 42 cards each makes the game last about an hour. She came within one card of her first ever win when Pads snatched victory at the last!
Pads had planned a hot-tub for Thursday and he was well enough to take advantage. Friday was clinic day. This time he wasnt given an option as it is important for the consultant to check him over before a new cycle of chemo starts. On the way back, mum pushing the wheelchair, he met the gastrostomy nurse and a fellow cancer sufferer. This lad is now blind from the illness, yet very perky. Pads was highly amused at the way he was 'explored' through touch and questioning. It is another reminder of how common suffering is and how many are in similar, if not worse, sitations.
I've just taken paracetamol and codiene 'Padi style' - throw them all in together and take a swig! At 1.30 am my eardrum burst, the pressure from an infection finally grew too great. Thankfully it's ten years since this happened last. We were on our way up to Achiltibuie to visit McFarlanes, stopping off overnight at Jean's. That was just one aspect of just one of our eventful trips North. I've got more pain relief on board this time but when the nurse on the phone asked me what my pain score was, I found it hard to be precise, not wanting to over-state it when Pads has endured so much so patiently.

Point made

2012-01-10T22:22:00.001Z

Pads spent almost the entire weekend in bed, which is probably where the parents should have been with their colds, but, for them, the 'show must go on'. The medical team said a cold would hit him harder and so it has although there are definite signs of improvement now. He descended for the tutor yesterday and is talking about the possibility of a hot tub later in the week. Today we got him down to meet Ian from Chwarel who are keen to do a piece for radio about us. We don't know what form that will take yet but we have the mic and some formative ideas. Pads coped well with this although some of it was awkward for him. He's implying the others are off doing useful things all day while he gets to crack machinarium puzzles:

Whatever you think of computer games, that is a masterpiece. I said that the most important learning happens in primary and he'd proved more than capable on every front there. He said he missed the last year of primary, so I upped the ante. Every second he's alive he's doing a worthwhile thing, just lying there. After he's gone we'll be left with the aftermath and the memory, now we have the reality, that, on a moment-by-moment basis inspires us and causes us to inspire others, by God's grace. Apart from that, he's got deep insight, and more's the point, spiritual insight.
If anyone in the USA is listening.... (yesterday I wrote this on Chick-fil-A's FB wall but ~~no response yet~~... - relatives in the US are in pursuit - thanks Renie and Joe!)

For the last 2 years Pads has smirked and giggled at a Chick-fil-A calendar (and we with him). To many people's surprise, he made it to 2012 and now there's a big empty space on his wall... Please can you tell me how can I get hold of one of these?

Finally, I've started a new twitter account for thoughts from family worship. I have used this blog for that in the past but tweeting is a lot more efficient. It's called 1st1st because it's vital to put fellowship with God first in a day, a decision, a life. The latest 'sweet verse' I have the kids learning is 'Seek ye first the kingdom of God and his righteousness; and all these things shall be added unto you' (Matthew 6:33). Sweet verses gain sweets in the mouth and sweetness in the heart which lasts a lot longer ;-)
I dreaded the responsibility of leading family worship and still have my qualms, but the Lord undertakes to bring something vital from the Bible by God's Spirit every time we approach it prayerfully. Even the most familiar passages repeatedly reward us with surprising discoveries of the things of God, if not God Himself.

Happy New Year 2012

2012-01-07T16:22:00.000Z

Nothing much has changed with Padi's condition except that he's picked up another cold which has knocked him out a bit more. Today he couldnt even be tempted out of his room for a hot-tub. New year was a good time with our dear friends from Scotland visiting over the weekend. The 'smalls' started back in school last week and even Moli can't avoid it on Monday.
We wish you all a very happy new year!

Happy hours

2011-12-29T21:47:00.000Z

Thankfully, we've had a really good few days since I last wrote. Christmas day was busy and wonderful with three services (AM, PM and afternoon for the Welsh service) but where better to spend such an auspicious day?
For Boxing day we went to Rhys and Ruth's where the hot tub was once again greatly enjoyed. The picture was taken by someone else - Pads rarely looks as placid as that when I'm pointing a camera his way LOL! We have to be careful with Pads fentanyl patches. If they stay on in the hot water the speed of the drug being released in through the skin is increased. Also we have to re-apply the same ones after the tub and they never stick as well the second time. A few hours after coming out of the tub he was needing paracetamol. How these have any effect at all compared to the other pain relief he's on is a mystery, but they do. With the the tablets swallowed it was time to make a sharp exit and return home to fresh patches.

Yesterday I rose early to join Steve as he aimed to kayak 20 miles of the Monmouth and Brecon Canal for The Joshua Foundation. There are some pictures in this Facebook album.
Pads is spending most of each day in bed except for a couple of focussed hours. For example, he emerged on Tuesday for a family get together at Steve's where he heartily joined in with the 'Name Game'

He's beginning to wonder how come he's still here, catching up with the medics and the rest of us... Harrison McKinion (via his dad's #pray4harrison Tweets) recently came to our attention and his severe and sudden illness was (at least) salutory in showing how quickly things can deteriorate.

Handel's Messiah with Humbug

2011-12-24T20:02:00.000Z

Moli had to wait until Wednesday for her birthday present - a trip with mum to London to see Handel's Messiah in Kings Place, with plenty of sightseeing and 'quality time' thrown in for good measure. Sadly, Moli's delight at the performance overflowed too much for the boorish man next to her who shattered her bliss and reduced her to tears with a furiously growled, 'SHUT UP!' According to the programme blurb, the orchestra's stated aim is to:

'serve communities by promoting concerts of unrivalled artistic excellence, and to make the emotion, drama and culture of live classical music available to everyone'.

John Lubbock, the director, has:

'tireless enthusiasm and life-long commitment to making music accessible to those who might otherwise have had little or no musical experience... He has gathered around him a group of distinguished musicians who are not only outstanding performers but share his ethos for making music of the highest quality accessible to people of all ages, from all walks of life'.

It seems that Mr Lubbock needs to channel some of that enthusiasm and generosity towards the more experienced concert-goers in his audience.
The incident nicely illustrates the difference between a merely aesthetic appreciation of the best that music can offer, and one that produces an appreciative response from a heart ripe to burst with exalted thoughts of the deeper spiritual realities, of which the music is a dim, even clumsy reflection.
Along the same lines, with Christmas on a Sunday this year, it means that we get to celebrate the birth as well as the death and resurrection of the Lord Jesus Christ our Saviour. I understand that everyone who marks the festival will find their own reason for celebrating Christmas... however, whatever reason that is, it pales compared to the real reason: the astonishing intervention by God to redeem us. Some poke fun at Christians by asserting that, if there is a God, when they meet him after death, they'll accuse him of not making himself more plain. But we have God's Son in the flesh, and God's word in the Bible. But, as Paul says, 'they did not like to retain God in their knowledge' (Rom 1:28)
After some 'vintage' chill-out time at Rhys and Ruth's on Thursday (including hot tub), Pads has had two quiet days, barely moving out of his room. Hopefully this has reserved enough energy to enable him to join us downstairs for a while tomorrow.
Now please excuse me, I'm off to join the others watching 'Elf' (Muppet's Christmas Carol is off the menu this year).

Happy Christmas from us all!

God, who at sundry times and in divers manners spake in time past unto the fathers by the prophets, hath in these last days spoken unto us by his Son, whom he hath appointed heir of all things, by whom also he made the worlds; who being the brightness of his glory, and the express image of his person, and upholding all things by the word of his power, when he had by himself purged our sins, sat down on the right hand of the Majesty on high (Hebrews 1:1-3)

Happy 14th Birthday part 2

2011-12-21T13:39:00.000Z

We're very grateful that Pads was in good form for the time spent with his friends from Glantaf. We could hardly believe the way he was. A game of 10-pin consists of picking up a large, heavy ball and casting it down a lane.

This he managed without his crutch 24 times, and his final score was in the middle of his chums. He kept this level of activity up for the trip to Pizza Hut and back home to watch a DVD. It almost seemed miraculous, and, in spite of a poor start to yesterday, he had a good and full day yesterday for the visit of cousins from England. After the long game of monopoly though, he was tired and his (many) limitations were a troubling reminder of the state of play... he's not wanting to get up today.
I must just add that LATCH generously supported his party on Monday.

Happy 14th birthday

2011-12-19T11:02:00.001Z

At the suggestion that he might like to come to the evening service last night, he made a couple of abortive attempts at standing up and I though it was 'curtains'. But he got dressed and decended the stairs. I popped back upstairs and when I returned he'd fallen soundly asleep on the couch underneath two dogs.
Thankfully he came out and enjoyed the service, curtailed to allow for the Carol Service starting at 8pm. But he was never likely to stay for that and tuned in via the live feed from home instead. He really warmed to the carols and the excellent comments upon them by Alun and the sermon by Pastor Dewi, Alun's brother, so he was there in his favourite place, with walls newly adorned with Glantaff's best wishes. Then it occurred to him to give Facebook another try on the i-Pad. It seems his class have their own page. He made it in to post a 'thanks' for all the cards. I know it'll mean a lot to his peers if he shows up there. As Malcolm said the other day, we have no idea how widely Pads has touched people, without in anyway seeking the limelight.
Today I went in at about 8:30am as his feeding pump was alarming to say it'd finished. He patiently raised himself up to take his morning meds, I put his duvet straight, said my 'happy birthday' and shut the door not expecting to see him again until noon, at least. Working from home is tricky. There's something big going off in work and a student was crying for help so I thought I'd get away with going in. Half an hour after arriving at my desk 'His nibbs' is up opening cards and pressies! :-))
So, as a way of getting my own back, here's the pic his mum sent me of him in action (note the can of plain pringles which we'd giftwrapped for him):

I just hope he can sustain it for his trip to 10-pin bowling and Pizza Hut later...
UPDATE on goodgifts. I pointed out to them by email that their website is not very clear about the process of telling the person you buy for what you've done. They responded as follows:

Thank you for your email. For each purchase, you will receive a card which includes a brief description and a picture of what it is that has been bought ‘in your name.’ These can be personalised if so desired. The card can either be sent to the person who has bought it, or the intended recipient.

Parcel from Glantaf

2011-12-17T22:01:00.001Z

Pads spent the whole of yesterday in bed - not wanting to attend the clinic. It didnt matter. If the doctor wants to check him out they can pop in on their walk into work. Anyway, sans Pads allowed mum to go alone and discuss Pads' case more frankly. It has been a bit of a theme this week that people assume or project onto us that we're angry with what's happening. We've had a think about that but we really dont think we are... Even Pads himself has only very rarely, and only under the hight of duress, been known to exclaim, 'I hate this'. Fair enough. Except 'fair' is not a word people can easilly reconcile with what he's/we're going through. As it's late, can I 'refer the honourable gentleman to the reply I gave earlier'?

This morning a nice-looking parcel arrived from Glantaf, Pads' most recent school. Recent, but he's not been there for many months. Each of the children in his form had created a Christmas/Birthday card for him. Many of the designs were simply stunning and the level of effort involved to produce them was considerable. By Year 9, the creative talents are clearly coming to fruition!
Even though the last couple of days have been very quiet, he did not make it to either the Thursday night Welsh carol service or the Friday Night Youth Rally. He did muster the energy to visit Mr Higham who came out of hospital last Monday.. Mr Higham was delighted to see him and chatted away... including an anecdote about an unexploded bomb that showed up in his garden back in World War II.
I should have mentioned that the 'Good Gifts' site has gifts for as little as £5 if you still want to 'give' anything to Pads for his birthday... the items I mentioned the other day were each over £15.

The wise men

2011-12-14T22:57:00.001Z

Pads did very little yesterday. He came downstairs for an hour to watch a programme and the fire was lit so it was warm. Today he was still worn out but, thankfully he was able to make it to Bo's Christmas show. The kids really enjoyed singing the nativity to Abba tunes. This slideshow is them goofing around afterwards.

Ethical gifts and counting the costs

2011-12-13T20:20:00.000Z

Pads had a very quiet day today, feeling 'zonked' after yesterday's visits from the play therapist and his tutor. However, it did make him easy prey for the nurse who needed to take some blood, to check that the chemo is not harming his counts. This involves a finger/thumb prick (he has a choice!) and then a collecting vial is scraped over the hole. It makes me wince to witness it but Pads is an old hand at this now.
A calmer day also gave him chance to consider options for his birthday... and he's plumped for a single game of 10-pin bowling with a couple of chums.
We're somewhat amazed to be looking at Pads' birthday. He'll be 14. Regarding gifts, as I've said before, he really does not lack for anything. However, flexing significant powers of imagination, some have managed to come up with a suitable present idea. If you are failing at this, and were thinking of going any higher than a card, Pads would like to encourage you to consider an 'ethical gift'. These two sites looked promising when he was reviewing them earlier today. http://www.goodgifts.org/ and http://www.presentaid.org/ For example, £15 will buy a single 'Medical sniffer rat', or, if vegetation is your thing, a similar sum will gift 20 fruit trees to struggling families in Nicaragua.

Our LATCH social worker arrived with the nurse to help Ally with a benefits form. You may have missed an article on the Welsh regional news last night, following up a recent report published by CLIC Sargent, 'Counting the Costs of Cancer'. There is no doubt that we have also been hit financially by the disease. Ally would be working at least part of the week, and earning more than our carer's and disabilities allowances. However, we have gratefully received significant financial support, as well as support that equates to financial, from charities, friends and family. Furthermore, we do not experience the same outlay on travel and accommodation that most families in our situation do because we live within 10 minutes walk of the hospital, a singular providence.

Pads' iPad

2011-12-10T21:29:00.001Z

Well it certainly woke him up today. At about noon he read the letter including a cheque from Brain Tumour UK to pay for the i-Pad he'd been promised a month ago out of the blue. We thought it was going to be delivered, but the funds arrived instead. And so, even on what threatened to be one of the busiest days in town, he was keen to visit Cardiff's Apple Store. The smalls came too as it meant unrestricted access to shiny gadgets. Apple Stores are renowned for their customer service and so it was well worth the visit. A lady called Boo spent a long time with Pads going through the various set-up screens and account creation steps. Back home there is a high degree of interest in the new shiny slate but Pads is slightly bewildered about it. He's overwhelmed (again) by the generosity. He never asked for it, did not want one, has all sorts of conscience-prickings about the fairness of it, thinking about others who could make much better use of the money... including 'world poverty' - partly a consequence of watching Richard Attenborough's film 'Gandhi' this week. I've been trying to point out that things are relative and that this 'superfluity' is intended to help him regain some independence through connectivity. The fact is that just a couple of doses of the chemo he's had would dwarf the i-Pad expense.
In a similar vein, reacting to an inbox full of facebook notification emails, he only just stopped short of deactivating his account. If you're a facebook user, dont expect to see much activity from him in the near future, in spite of the potentially much easier access he's just gained to it. I've set him up with some bedtime watching: a documentary about the commercialisation of the world's food supply.

Into December

2011-12-06T20:16:00.001Z

Into December we go... just a couple of weeks to Pads' birthday. We're often asked what he might like, but what do you get for the boy who has everything and wants for nothing? You cant even get him 'consumables' as he's eating almost nothing, certainly nothing sweet. This photo was taken at a pretty lavish get-together at a friends' house last Saturday - note the bare cream-cracker (and splendid tree!).

But his health continues pretty good. He's avoided a couple of nasty colds that the others have brought home and there's been no dramatic further loss of faculties. It seems like the temozolomide is holding the cancer's progress. The consultant wouldnt be drawn on whether the clomipramine was also helping. I started working from home more in November, at the suggestion of the consultant, going in to the office for meetings and etc. Thankfully it's just a 10 minute walk over the park. It is hard to know whether to continue that policy and for how long. I'm grateful that my bosses, well, everyone really, is extremely supportive. It's tempting to think ahead, as to whether I will still be 'working from home except meetings' in a couple of months time, but we just have to take each day as it comes. I bumped into Dan, the social worker from LATCH, in early November. He was organising a Christmas night-out for the brain-tumour support group. I had to confess then that I could not imagine Pads would make it, but he's there right now 10-pin bowling!
Last week we finished our annual Christmas review for posting with a Christmas card to some friends who we know are unlikely to check this blog. You can download a tree-friendly version from this link.

Baptism service

2011-11-26T22:24:00.001Z

I spent a while this morning updating my Christmas Readings for Advent in time to distribute a few to friends today and tomorrow. If you'd like a copy, you can download it in MS Word format.

So we hired a baptistry and it worked out really well, fitting nicely in the corner to the left of the pulpit.
Pads looked up at me from bed with a weary and pained expression when I asked, at 1:30pm, if he was coming out to the baptism. In the event, once he'd come around, he was in good form and really enjoyed being out. It was another fantastic gospel opportunity well taken by the Pastor in a sermon from 'It is finished', Jesus' words from cross recorded in John 19. It is finished - He had put an end to the enmity between God and man through atoning for our sin. This alone was the basis for our confidence in looking forward to eternal life.
In the evening the kids all got to watch 'Cry Freedom', one of Ally's favourite films, and they were all expostulating about apartheid afterwards, so that it was difficult to get them quickly off to bed! All-in, we've had a pretty good day.

Happiness is a warm puppy

2011-11-25T16:49:00.001Z

Yes, another picture of the dog.... but actually Pads legs are the shapes underneath the duvet Jack has snuggled into. With nothing to get up for, he's liable to stay put until the afternoon, and who can blame him. Tonight he's in bed early, whacked from the day's activity and saving his energy for the baptism service tomorrow afternoon. That is scheduled for a live broadcast on the Internet.
To avoid the problems of a few weeks ago, the dietitian suggested he had a litre bottle of the 'with fibre' feed (instead of 500ml of with and 500ml without). This also that means we don't have to disturb him to swap the bottle over first thing in the morning.
But some days are busy enough, with visits from the tutor and the play therapist, although he was too worn out by those to also go out to the chiropractor this week (who is still giving him free sessions). He spent last night in Auntie Ruth's again, which he greatly enjoys. He assured us that it wasn't just for her i-Pad, as there's a charity that wants to get him one. With the loss of dexterity in his left hand and some difficulties with his vision, an i-Pad will restore his ability to use the Internet, where a traditional computer has become just too difficult to operate.
After the clinic last Friday, we felt like we wanted to go back for another chat with our consultant and they agreed to meet on Monday at 4pm, which was very accommodating. Pads doesn't enjoy being talked about much, quite happy to leave it to us to talk things over. We do need to read the signs better so that, once the medical observations have been done and he's had a chance to ask questions, he can leave us to chat further. Communicating that or even finding the right words to order can be difficult so we need to look at using signals instead of words. Even without Pads in the room on Monday, the consultant was still being quite positive about the slowness of his decline. Without a steepling decline in his faculties between visits (2 months apart), it can be hard to discern what is 'accomodation' (him learning to cope with the state of his disability) and genuine loss of function. I also got a chance to see the pictures of the last two scans, showing the discernible advance of the tumour. With this much abnormal activity, the brain has a hard time re-routing messages and instructions and this could account for various symptoms, including the way that Pads feels hot and he's sometimes ill without warning. There are no plans to scan again for a while unless something happened that really demanded it. It's not a particularly pleasant procedure and there's not much to be gained at this stage.

Clinic yesterday

2011-11-19T16:07:00.001Z

Pads made it out to Swansea last night, with Peniel Green, Llansamlet hosting the latest Gospel Preaching Rally. Dafydd Morris spoke warmly from Psalm 23:1, 'The Lord is my shepherd'.
Everyone was pleased to see him and assure him of their prayers, although this level of attention can be difficult to cope with: he sometimes feels under pressure to perform in a certain way. That's happened a few times recently. There's none of that while tucked up in bed, and a few other places. One of those is Rhys and Ruth's where he spent Thursday night for the first time in weeks. It gives the parents a break too :-)
Yesterday was clinic day. The consultant checked him over and couldn't find much different from the last time. She was impressed with his walking and the way he could look left, the notes said he couldn't do that last time in the same way. Since adjusting to two tube-fed bottles per night, his weight has improved - up to 39.5 kg on the clinic scales.

Visit to Mr Higham

2011-11-12T13:07:00.001Z

Pads had a fairly uneventful week... until Wednesday. He'd enjoyed 'Toddlers at Tabernacle' again. Afterwards, Mr Higham was in two minds about whether to go out for lunch. As he tried to sit down again, the office chair had rolled backwards and so he ended up on the floor. A rapid response paramedic arrived to assess the situation but there was nothing for it but to take Mr Higham to casualty by ambulance, which took another 40 minutes to come. While he was waiting he was in quite a lot of pain and feeling very frustrated and worried about Mrs Higham, ill at home. A number of church members were waiting with him and trying to reassure him, Padi amongst them. Pads did not like to see Mr Higham so anxious and eventually said, 'With all due respect, the One who is looking after you, will look after her too.' The room fell silent.
At hospital, the X-ray's revealed a fractured hip which meant only one solution: a routine hip replacement. This was carried out on sucessfully on Thursday afternoon. The picture below is of Padi visiting Mr Higham yesterday afternoon - they are very close friends.

Thanks to LATCH again

2011-11-04T23:41:00.001Z

Kay, that lady from LATCH called again on this week and they're insisting on paying for our new fridge (had to replace the old one a couple of weeks ago) and a new washing machine. Our current machine is making some very strange noises. We called out an engineer to it recently who confirmed it was on it's way out. The old machine has served us well, it was a legacy from Mrs Locke, a beloved neighbour who passed away four years ago.
I cant share too much of what's going on with Pads although he continues cheerful and patient in the midst of his trial. He enjoyed 'Toddlers at Tabernacle' again on Wednesday - it's good to have something to get him out. But then he spent the rest of the day in bed. Thankfully he still has a good head of hair, even though it did start to come out a bit at the start of the week. And there's been no return of the itchyness he was troubled by at the start of the week.

Itchy

2011-10-31T09:17:00.000Z

There were no signs that the trip to Heatree had worn Pads down. He was awake for most of the day and attended the evening service yesterday, staying up quite late to finish some codebreaker puzzles. It was wonderful seeing him scrapping with Jack on the floor.
We also had a visit from a lady coach driver that met Pads a couple of times over recent months. She was so affected that she organised a collection and presented it to him at church last night, 'from all of us at First Coaches'. He's supposed to 'do/get something nice' with the money but he's run out of 'wishes', having set his sights on heaven.
Today, after a disturbed night, he's woken up itchy, which is a bit of a mystery symptom. He's just got in the bath to see if a swill will help, after loratadine did not, saying, 'this is one small step for man'. It seems his hair is starting to fall out again too. However, the itinerary for the day is for the play therapist to visit at 11, then the tutor will be over to watch a film, and he's asking to meet up with his cousin Llyr at some point in between all of that!

Back from Heatree

2011-10-29T22:35:00.000+01:00

Thankfully we're back safe and sound from the brief church holiday in Heatree Activity Centre, Dartmoor. We'd all planned to go but it was always going to be a last minute decision as to whether Pads would be able to travel. We not only travelled but enjoyed the scenery, food, fellowship and brief times of devotions, led by David Kay and Vernon Higham.

2 pics and 2 quotes

2011-10-25T21:52:00.000+01:00

Pads plus Jack at Knapp

He comes to us as of old by the lakeside. He speaks to us the same words, "follow me", and sets us the task which he has to fulfil for our time and those who obey him shall learn in their own experience who he is.

Dr Martyn Lloyd Jones on John 21:19

The decay of the outward man in the godless is a melancholy spectacle, for it is the decay of everything; in the Christian it does not touch that life which is hid with Christ in God, and which is in the soul itself a well of water springing up to life eternal.

James Denny on 2 Corinthians 4:16

We've had a couple of disturbed nights but Pads has been coping pretty well - he was up for a while today to meet his English cousins although he did fall asleep in the chair at one point.

Half-term puzzleball mania

Tablets and Tea

2011-10-21T22:16:00.002+01:00

Pads walked from the car to the clinic, where he was weighed and found to be a kilo lighter than last time. He told the consultant that he did not want any more flax seed oil, which Uncle Neil had kindly researched and provided. It may seem strange that he's refusing this, considering all the other interventions he's tolerated. Perhaps the difference is the level of trust he puts in the doctors. The consultant confirmed that if they thought it would help they'd be prescribing it. Of course, alternative therapists might scoff at that, but, even in this degenerate age, we generally believe that the hippocratic oath still stands for something.
Pads' diet is much reduced now. He will generally only eat the occasional bite (e.g. a twiglet to go with a tablet that requires him to take it with food), although he drinks plenty of tea. We'll be boosting the PEG feeds to two bottles a day. We start one off very slowly (20mls) at 9pm in order to turn it up at 11pm (to 60mls) which means it should finish around 6am. This avoids him needing to get up in the night, when the best of us are bleary and unstable, but he's also got to shuffle along with the feed pump in his (good) right hand, risking a fall. At 6am we can swap out the empty bottle, give the morning meds and possibly not see him again until midday. But it partly depends on what is planned for the day. He got up for the tutor arriving at 9:30 on Thursday. Last Friday Pads enjoyed a trip to see 'Jonny English' with some of his old school-mates. We'd forewarned them that he's using a crutch, slurring words, perhaps a bit quieter. In the event though he was able to 'raise his game', he was quite chatty and refused the wheelchair in favour of walking the 200 metres to the movie theatre. Whether it was this that wore him out or not, he spent only a few hours of last weekend out of bed. After wanting to be at the evening service, he'd dropped off in his back-room seat and was uncomfortably difficult to rouse.
Yesterday he was pleased to visit the beach. For a while he's wanted to get Jack (our Jack Russell dog) to have a dip in the sea to cure his stinkiness! His memory loss may be to blame for not quite connecting that Jack's problems are mainly 'internal'.

Believing

2011-10-18T16:50:00.003+01:00

The word of last weekend was 'believe'. The WRU even had special t-shirts printed with the word. At the stadium, Only Men Aloud! were performing the 'Don't Stop Believin' song with massive pathos. We were told to believe, as if that meant something in itself. I'm not sure what it boils down to. 'Believe' is a powerful emotive word. But unless that believing is connected to something powerful or certain, what does it amount to? We could all believe that Wales were going to win, even in the final, but that possibility vanished on Saturday. Wales could have won for so many reasons but the most controversial was the 'red card' (sending off) handed down to the captain for a dangerous tackle. Gatland, the Welsh coach said, 'We just feel like the destiny of the result was taken out of our hands'. In as much as the Welsh team's destiny seemed to be in their own hands, 'events' took a strange turn, in spite of all the supporters' most earnest 'believing'.
After over three years of treatment, battling against cancer, it may seem strange to some that we are 'dali gredu' (Welsh for 'still believing'), still singing songs like, 'Great is Thy faithfulness, O God my father'.

At one level, when we believe in God, we're not doing anything remarkable. It is a mere working out of probabilities. The idea that the elegent complexity and order that we take for granted around and within us could come into being without a designer is a leap of faith bigger than any required to acknowledge that, just as a higher intelligence was required to make the computer this post was written on, a higher intelligence was and is at work around us.
People say, 'It's not fair, what's happened to you and Padi', but what has fair got to do with a universe that is supposed to have sprung out of nothing by chance and for no purpose? Chance knows nothing of right or wrong, fair or unfair. One loses and another wins, one dies and another lives. If you cherish the opinion that the universe is governed by 'chance', why does it matter at all what happens? And. Yet. It. Does.
Ally used to see a lot of this in her line of work. Celebrities that see their end coming have been known to make a great show of fighting cancer. You've got to keep on believing, they say, and Dr's are careful to avoid damaging any vestiges of hope. There may be some psychosomatic benefit to it... But death is inevitable, and the clinging to life in the face of terminally deteriorating health is 'a melancholy spectacle', as one preacher put it, especially if all you have to believe in is believing. All our believing could not prevent the French winning on Saturday. All our believing cannot prevent death. God can, but he has something better in store...

Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him. (1 Corinthians 2:9)

Do you love God? That is the greatest command, and the one we least regard (cf. Matt 22:37). People say to us, 'I wish I could have faith', but they are not willing to go to the One who can give it to them. The 'believing' that saves is a gift from God. He is more willing to give it than you are to seek him for it: we see that in the giving of his own Son into the world, to be crucified, suffering the punishment our sins deserved so that people could be free to live with and for God, for time and eternity. This quality of believing is created by God the Holy Spirit in our souls. Ask Him for it. The 'immortal invisible, only wise God' (1 Tim1:17) is well worthy of your belief, your praise, your life, your all.

Were the whole realm of nature mine,
That were an offering far too small;
Love so amazing, so divine,
Demands my soul, my life, my all. (Isaac Watts)

In fact, we believe that God is doing something 'so amazing, so divine' through our 'dark providence', and, although we do not see it clearly, who knows, part of that could be your own salvation.

Tired

2011-10-08T10:39:00.001+01:00

Ally went to meet the consultant for a look at the scans as I was having a busy week of inductions for the new students. The consultant was pleased that the rate of change between June to April was slower than from June to October, indicating that the timazolamide is having an impact. However, there is an increase and this is reflected in tiredness, etc.
Pads enjoyed watching Mr Bean at Neils after he'd got up at 2pm. I was getting a half-soaked slurry but fairly detailed account of the hilarious 'Funfair' story at 10pm! He'd also enjoyed being around when Moli's school friends came over for dinner, but he didnt eat anything. Ally'd gone to Swansea for a meet up with other cancer mums, while the rest of us piled into the big car for the TCFF Gospel Preaching Rally. I was struck from the outset of Roland Burrows' sermon when he mentioned that Luke's Gospel is known for illustrating the compassion of Christ for outcasts. In this case it was for Zacchaeus, whose name means 'Pure', although he was anything but that: an outcast in a cursed city. This passage contains the key to Luke's gospel.

For the Son of man is come to seek and to save that which was lost. (Luke 19:10)

We've supported the Christian Lewis Trust as they have helped us along our journey. Now they are looking to recruit an additional Play Therapist/Counsellor. The money could come from winning a Nat West Communty Force grant. If you would like to suppor them, click on http://communityforce.natwest.com/project/3732 and register your vote.

MRI scan

2011-10-04T20:04:00.001+01:00

Pads went for an MRI scan yesterday. I went back there today to collect an item of lost property and the two adults were talking about how uncomfortable they felt being in the scanner was. They'd both had to 'press the red button' to stop and have a break. Pads just gets on with it. His lips were getting dry but he waited between scans to lick them.
The results came through this afternoon. They showed no spread to his spine but increased tumour activity. This is consonant with his condition.

'What the Bible means to me'

2011-10-03T22:08:00.002+01:00

About a year ago I was included in a general call for a brief contribution towards a book about 'What the Bible means to me'. Last week a package arrived with a number of complimentary copies, announcing that the book was now in print. Here is my bit:

‘Grace unto you, and peace, from God the Father and our Lord Jesus Christ’This phrase by Paul, addressed to the church at Thessalonica in 54 AD. It is one of those introductory verses we often skip, lacking something to say or think about it, as we pass on to the ‘meat’ of an epistle.‘Grace’ means ‘unmerited favour’. If someone was unkind to you, and you were kind in return, that would be grace. Straining to adjust the focus to God’s grace, with a correct view of our state in sin, any favour shown towards us, rebels, iniquitous as we are, is far above anything that could be imagined issuing from a human heart. No doubt Paul could act graciously to these people he had recently visited. But any other name, including Paul’s, would empty the verse of any real use to readers. As great as it would be to receive grace from Paul, he died long ago. Even when he was alive, Paul could not be everywhere at once. God, being everywhere, and eternal, is actually present with me while I read the words, even in the words. It is wonderful, vital, powerful truth to me that the simple words on the page actually convey God’s grace to me, almost 2000 years after they were written to these Thessalonians. The words remind me of gospel blessings: Jesus’ perfect obedience to God’s law counts for me, just as the dreadful punishment my sin deserves was borne by him on Calvary’s cross. Reconciled to God the Father, I inherit an eternal home with him and all his saints. But the words are more than a reminder; they are alive through the Holy Spirit and afford a moment of fellowship with my gracious Friend, whom to know is life eternal.I have tried to take Rev. Jim Elliff’s parenting advice with my four children: he suggested taking them off, one at a time, ‘into the wilds’ to spend quality time together. The first to get this treatment was Padrig, then aged ten. In May 2008 he toiled up Pen-y-Fan, South Wales’ highest peak, and then the clouds came over, pelting his face with hail. Through the sobs he began reciting Psalm 46 the whole of which we’d recently been learning... ‘God is our refuge and strength, a very present help in trouble...’ It was a touching moment to watch and hear him draw courage in that way then, but soon he would have a far more arduous trial to cope with.In August 2008, we aborted our first camping holiday abroad, in France because Padrig was in excruciating neck pain. The hurried return journey was harrowing. After being assessed by many different medical staff, Padrig was eventually diagnosed with medulloblastoma (malignant brain tumour). The operations, radiotherapy and year of chemotherapy were very tough. In December 2009, Pads was scanned again and the result was clear. But five months later, he sensed a familiar feeling: a scan revealed the unthinkable had happened. Against the odds, and to universal dismay, the tumour was back. More surgery, chemotherapy and radiotherapy followed. This time the chemo was so harsh that his own stem-cells were harvested to ‘re-boot’ his immune system afterwards. Apart from the very lowest moments of agony, he really has not complained at all. God has sustained us. We have found His promises a sure soul-foundation. All the suffering is real, we are not stoics. The Bible communicates the grace of God which transforms pain into blessing. Pads still asks me to sing his hymn before the light goes out, ‘Oh, the deep, deep love of Jesus’. Few there are who avoid the trials of this life, either for themselves or someone close. The Apostle Paul knew more than his fair share, but when he writes, ‘I take pleasure in infirmities’, because they press home the immense and eternal blessings and benefits of being reconciled to our Glorious Maker through gospel of our Lord Jesus Christ.

Pads is quite weary, spending most mornings in bed so the Chippenham conference was out of the question on Saturday - he was given a special dispensation to go last time, being too young at the time. At lunch I remembered I'd ordered a cream tea for him as it represented good value and I knew he'd not want the scone!
He's getting some of the symptoms he remembers from the first time the tumour made it's presence felt, but thankfully none of the pain, and his cough has tailed off almost completely.

Up with the lark

2011-09-27T23:57:00.000+01:00

Thought I'd seen a ghost this morning but no, it was 8.30 and Pads was all set for his sleepover trip to Auntie Ruth's (including a dip in the hot tub - we use tegaderm to protect the fentynal patch although the hot water probably accelerates the release of drug... Anyway, it's a great way to get him washed!)
Moli's been off school for 2 days with a 'dizzy bug' but is showing signs of improvement now. They finally hit their fundraising target for the race last Saturday, which had to be abandoned after a couple of hours because the wind was so slack. Still, it was a rare opportunity for them and they generally had a great time together.

In every fire...

2011-09-24T08:37:00.000+01:00

Wonderful snippit from Matthew Henry:

The Lord knows those that are his; the world does not. When the mirth of carnal worldlings ceases, the joy of the saints is as lively as ever, because the covenant of grace, the fountain of their comforts, and the foundation of their hopes, never fails. Those who rejoice in the Lord can rejoice in tribulation, and by faith may triumph when all about them are in tears. They encourage their fellow-sufferers to do likewise, even those who are in the furnace of affliction. Or, in the valleys, low, dark, miry places. In every fire, even the hottest, in every place, even the remotest, let us keep up our good thoughts of God. If none of these trials move us, then we glorify the Lord in the fires.

It is taken from commentary on Isaiah 24:13-15:

[13] When thus it shall be in the midst of the land among the people, there shall be as the shaking of an olive tree, and as the gleaning grapes when the vintage is done.[14] They shall lift up their voice, they shall sing for the majesty of the Lord, they shall cry aloud from the sea.[15] Wherefore glorify ye the Lord in the fires, [1] even the name of the Lord God of Israel in the isles of the sea.

Excitement mounting ahead of race

2011-09-23T18:28:00.001+01:00

Thankfully Peter (aka Grandad) was able to fix Holly's gearbox on Wednesday (horay!!!). So the plan is for Ally and Moli to motor down tonight after Friday Fellowship. If you havent sponsored them yet, it's really easy via mobile phone text message - for a £1 donation simply text this message:

VUVG60 £1

to this number:

70070

Thanks!

Sadly there's no way of recording your name if you donate that way.
Before that Pads has been for a check-up clinic Nothing much to report. He continues to be very tired in the mornings and the cough is still about, although I think the big coughing fits are less frequent.
LATCH organise pamper days for the mothers of children on treatment but the dads days take a slightly different flavour. This afternoon we're booked for 2 hours of white water rafting! Not a bad way to spend my last afternoon before going back to work full time next week. We'll see how it goes. I have options on working at home if I need them. We're grateful that work is being as flexible as I need them to be and everyone is very supportive.

Bit more chirpy

2011-09-19T21:49:00.000+01:00

We're glad that Pads seems to be a bit more chirpy today - perhaps his cold has turned a corner... but the cough is still giving the occasional paroxism. He's been quite busy, with a visit from his nurse to take blood (results say his counts are all fine), beating the play therapist at Skip-Bo (using his patented 'hand holder' - a strip of wood that allows him to view his cards without having to hold them in his left hand), then watching 'Big' with the tutor and all topped off with a trip to the chiropractor.
We're thrilled to see Moli's target of £100 nearly reached on the justgiving page so thanks to those of you who gave for that. Their participation in the race was put in doubt yesterday when Holly's motor couldnt manage reverse. We'll find out on Wednesday if Peter manages to fix it. Meantime, perhaps you would like to suggest something else that Moli could do to justify the sponsorship? :-)

Clomipramine and penacillin

2011-09-17T22:12:00.004+01:00

We met our consultant yesterday and had a good chat about the situation. They explained why it had taken a while to get the green light to start clomipramine: it was a case of getting answers to all the relevant questions. So he began taking 25mg last night working up to 75mg over a period of three weeks. He was already taking amitriptyline for it's pain reducing benefits but that has to be reduced as it's in the same family as clomipramine. We were also advised to start the antibiotics because this cough is not getting any better. He is amazing at taking tablets! Usually they just go down in one gulp!

Moli to race Holly

2011-09-15T19:33:00.001+01:00

It's a bit of a dream opportunity for her, but Moli (and her mum) is booked to crew for her Grandad aboard Holly for a race on the 24th September, the St Wilfrid’s Hospice Coastal Yacht Challenge. We're aware that we've done a lot of sponsored things this year, but even if you have just a pound to spare, it would great to help her meet the modest £100 target. The Justgiving page is at http://www.justgiving.com/moli-n-holly/ Thank you!

This video was taken on another trip just over two years ago.
In other news, our consultant agreed to meet up with us tomorrow about the clomipramine, so we're inching forward with that. Pads is coughing a lot and it's giving him pain in his back, but he's bearing up well. Yesterday we had him checked out with the GP who was certain there was no infection. I took a prescription for antibiotics in case the cold turns nasty on the weekend but hopefully he won't need it. Today he had a visit from the tutor and went out the chiropractor in the afternoon.

Kefir and Flax

2011-09-13T20:37:00.001+01:00

Although enjoying the benefits of modern medicine's achievements with symptom control, we've reached the limit of what can be done to cure Pads through that route. So we're in new territory of trying a couple of things that, for the lack of a randomised controlled trial, would be branded 'alternative'. Neil's kindly been doing quite a bit of research on the Internet and there is a lot of information out there pointing to the benefits of flax oil mixed with kefir. Ironically, next Monday I have a lecture to give entitled 'Health on the Web'! My 'fit note' allows me to be on sick leave but still keep the lecturing commitments I made before the summer. I popped into work today to update them on our situation: everyone is so sympathetic. I felt encouraged that going back on the 26th will be as easy as it could be in the circumstances. Naturally I'm reserving the right to go back 'on the sick' if Pads deteriorates significantly and this impacts on what I can take on, but work have been very understanding.

Kefir (photo is by A. Kniesel) is actually the name given to the 'grains' or the liquid which results from their fermentation in milk. This wikipedia article is useful to get an overview. It is simply a very nutritious yogurt drink that's consumed in various ways across the world. Flax seed oil mixes well with kefir to deliver oxygen to the cancer, which it is apparently much averse to. Pads was worried initially that 'bolusing' it (pushing it in with a syringe instead of using the electric pump) would make him feel ill, but the amounts we're dealing in he hardly notices. 40ml of kefir will support 15ml of flax oil when whisked, and this is easy to squirt in through Pads feeding tube. We hope it has a beneficial effect and it's worth a try, at least his gut should benefit, which will be handy if his cough will not clear up without antibiotics.
Still no substantive word from the medical team on clomipramine. It feels rather slow. The last we heard they were trying to get the dosage right, but this is a well known drug...

Back to School, or not

2011-09-08T10:35:00.000+01:00

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. :-)

Slideshow from Sailing trip

2011-09-05T10:44:00.002+01:00

Here's a slideshow with the best photos from our trip on Holly last Friday. Pads is still very weary, having spend most of yesterday in bed too. He's moving about now though, anticipating a visit from the play therapist at 11pm.

Making the most of it

2011-09-03T22:55:00.000+01:00

This week we have again been trying to make the most of Pads reducing mobility and stamina. On Tuesday we visited the West Midlands Safari Park. We were given complimentary tickets by dint of having been to 'Give Kids the World' in Florida. On leaving, GKTW we were presented with a document that entitled us to free entry to theme parks all over the world. The safari park is about the only UK participant in this scheme. I dont think we'll forget the nosy giraffes eating Cherios out of our hands while Pads was trying to prevent what he insisted was his breakfast from heading down the animal's neck!

We spent the night in a £9 Travelodge up there, which gave us a shorter trip up to Alton Towers, entry paid for through Tesco vouchers. Pads really enjoyed his first ride (Sonic Spinball) although it gave him neck pain shortly afterwards- a little disconcerting... but then both Ally and myself were feeling yanked about too! With a couple of paracetamol on board, Pads was willing to try one more ride - 'Rita' whereby one is accelerated along a rail gun to a speed of 60mph in just over 2 seconds. We were so tied up with making sure he was ok afterwards that we forgot to check the ride photo. While his siblings flew around the park, Pads and his parents enjoyed the more sedentary delights of the aquarium, cable-cars and a pirate show. Although it may be gutting for 'normal' people to watch disabled folk cut to the front of the queues, it was not possible to get Pads to the park any earlier and he had no desire or capacity to go on more rides than he did.

After a quieter day on Thursday, it was back on the road to Birdham for a day trip aboard Holly, Grandad's boat. The weather was perfect.

Today Pads has been recuperating. He had to be woken up to take his morning meds and only got up for a few hours this afternoon. Hopefully this will see him more lively tomorrow. He says he's glad the holidays are over because he expects 'normal life' to be a bit less hectic. Although we've done a lot, it's always been tailored to his ability to cope with whatever we were attempting.

Longleat

2011-08-27T22:00:00.000+01:00

We decided to visit Longleat today and use up the 'Passport' tickets from when Pads went there feeding the tigers (back in May). Ally finally got to look around that house and we were amazed at the Hunters of the Sky show (see http://www.longleat.co.uk/shows/hunters-of-the-sky where there's some video too - the birds and handlers come in from http://www.hawk-conservancy.org/index.asp). The journey was worth it just for that.

Clinic day

2011-08-26T19:44:00.000+01:00

Ally pushed Pads over to the hospital in his new, ample wheelchair. He was pretty jovial. With a twinkle in his eye he asked 'what if I do not want to have the MRI scan' which is proposed for 3-4 weeks time. The consultant patiently explained that it would be useful to get a clearer view of what was going on, but that she would explore how it could be kept to as short a duration as possible. She tested his neurological system by asking him to touch each finger with his thumb in order, push with his feet in different directions and follow a finger with his eyes. In spite of everything, she seemed to be quite pleased with his responses. Belying the significant deterioration in his motor skills, he's still managed to build this Ferris wheel from a KNEX kit!

Pads starts a new cycle of temozolomide next week. It's impossible to say whether it is doing any good at the moment. A friend of Ally's mentioned a recent BBC Radio 4 programme which explored a drug called clomipramine that selectively kills certain types of brain tumour cells. Substantial trials had not been undertaken because it is an old drug, used to treat depression, and drug companies who fund so much research have nothing to gain from investing in trials. See this CancerActive page for more information.
Ally handed a copy of a web-page about clomipramine to the consultant and she didn't seem to have heard anything about it. She promised to investigate it next week.

Welcome home

2011-08-20T23:10:00.000+01:00

Pads returned home at about 12:20 from the Over the Wall camp. Although limited in mobility, he'd been pretty active in the week with horse-riding, kayaking, clay-pidgeon shooting all worthy of mention. They have a great time though in general, singing silly songs, issuing challenges to the other groups, as well as taking time out in their groups to reflect together with other children in similar circumstances. He'd coped remarkably well with the imposed sleeping pattern (up at 7:30!), although he was blessed with his own room.

Still 'over the wall'

2011-08-19T22:31:00.000+01:00

No news is good news - we've not heard from Pads all week. This means that he must be doing ok at the Over The Wall camp. Meanwhile, we opted to take up Ally's sister's offer of staying at theirs in the South East. After the torrential downpours of yesterday we were very happy to be under a roof rather than canvas, which was another option.
So we visited a few places (Runnymede, Cliveden House, Windsor and Blenheim Palace!) and met up with Ally's parents for lunch. Thankfully back at home now, looking forward to seeing the main man tomorrow.

Pads goes 'Over the Wall'

2011-08-15T20:54:00.002+01:00

Amazingly, Pads went off to his 'Over the Wall' Camp today. I say 'amazingly' because as soon as he relapsed last time, we were conscious that other children would want to go and so we were concerned to make his place available as soon as possible... but we were advised to keep his place. In fact, those departing today were kept waiting because two families had not bothered to tell the organisers that they were not coming! Pads siblings, who have all been OTW could not believe this as they had such a great time. After his Ellen MacArthur success, Pads was very keyed up for this trip. He's not due back until Saturday!

Meanwhile, the rest of us are keeping busy. For example, I spent a while publishing this selection of photos from last week in Cornwall...

Beached

2011-08-10T09:30:00.001+01:00

Yesterday we had a lovely afternoon on Portreath beach. The bakers there make a particularly authentic pasty, and the seafront has good features. We avoided paying the steep car park fee (£1 per hour) with Pads' blue badge and he tottered down onto the sand nearby, where he, perched on a low seat, played a full part in burying folk. As enjoyable is it all was, we couldnt help remembering that the last time we were all together doing that kind of thing was three years ago in France, when Pads' mystery illness was really starting to bite. We'd have a great day on the beach and then he would be completely thrown by 'something'...
In my previous post, I said that The Joshua Foundation had helped us pay for the caravan. In fact it was Jacob's Starz. I've corrected that now and pinched myself again to check my facts with Ally.

Trevarth

2011-08-09T11:23:00.001+01:00

Thanks to Jacob's Starz (see their Facebook page) we've taken a short break in Cornwall. A caravan down here became free to Jacob's Starz for a couple of weeks ago, but we were unable to take advantage. Our LATCH social worker explained our situation to Jacob's Starz and they came back willing to sponsor us the lions share of a holiday in a week of our choice, which coincided with Ruth and Rhys' holiday, just 3 miles away. Trevarth is a quiet, clean, family-run caravan/camping site. The weather has been bright and fresh, the wind making the formidable Chapel Porth surf 'messy'. Pads was happy enough to 'chill' in a sheltered spot while the others took their churn in the waves.
Sunday was a high day with excellent sermons from Jon Stobbs at Penzance Baptist Church. It is always wonderful to hear the gospel clearly proclaimed, it is a rare thing when away from home. The message from Romans 3 about 'Redemption in Christ' reinforced the biblical emphasis on the need to be saved by Christ's paying the whole penalty for our reconciliation with God. This is no mere 'release', someone has to pay - sinners in hell forever or the Saviour on Calvary's cross for 3 hours. We cannot pay off God with any goodness or good deeds we think we may have. It is not a plea-bargain or a trade-off. Our salvation is ALL gift, ALL grace. Hear the sermon for yourself at.
http://www.sermonaudio.com/sermoninfo.asp?SID=8811043204
We were sad to hear that only 35 in the congregation back home - it's a reminder of how fragile we are, how much we need to fervently pray for revival, how few really care about the Lord and the needs of their eternal souls.
We've enjoyed a calm few days so far, chatting over memories and playing games (like Pictionary Man - as in the photo). Yesterday's memory verse was Romans 8:18 'For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.' Today's is
2 Cor 4:17 'For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory'

Crutch is the answer

2011-08-06T22:34:00.000+01:00

Our POONs (Paediatric Oncology Outreach Nurse) nurse came up with the best solution for Pads unsteadiness, delivering a pair of crutches on Tuesday. It took a while to get the length and technique quite right but now we're much happier to see him moving about. A single crutch with a lower-arm cuff gives more support than just a pole or stick held in the hand. Pads has painstakingly decorated it with little feet stickers.

Sticky

2011-07-31T23:23:00.000+01:00

Pads blood results from Friday were fine for another cylcle of chemo. At the clinic they were discussing his mobility and the consultant was telling him he should use a stick or he risked falling and breaking something... which would really put paid to his independence. He's been experimenting with a hiking pole but he finds it difficult to hold it in his left hand, and that's the side that needs to be stabilised. So he's learning how to launch himself around the house between gaps.
Today was Asher's birthday but he wasnt really able to get down to the grand pressie unwrapping, even though he was really excited about the mobile phone he'd helped to choose and buy for his brother. Asher is VERY happy with his new phone. He says it's the best gift he's ever had, with the exception of his Wales rugby shirt.
The picture is of Pads being introduced by Mr Higham to Dr Peter Masters of the Metropolitan Tabernacle, with Rev. Jack Seaton (Inverness) in attendance. This was at the end of our Summer Conference week, Dr Masters just having delivered a lively gospel message from Luke's account of their shipwreck in Acts 27. It is a happy thing to look back on a good week for the Church, with many visitors enjoying solid, challenging Christ-exalting sermons and fellowship. Many of the messages spoke directly into our situation, with the sovereign providence of God a running theme throughout. To quote Mr Seaton, 'when God is not exercising his power, he's exercising his purposes'. As well as both serviced today, Mr Seaton kindly agreed to take this afternoon's doctrine class too, from John 11 and Jesus' deliberate delay before travelling to raise Lazarus from the dead. Amongst other things, he pointed out that Paul, as an apostle, could have 'just healed' Epaphroditus, but he seems to have nursed him back to health through natural means.

Patchy

2011-07-27T09:11:00.002+01:00

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

2011-07-20T14:08:00.002+01:00

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

Baptism

2011-07-19T21:44:00.003+01:00

We held a very simple 'family only' baptism service for Pads after the evening service on Sunday night.
The first hymn was by Adoniram Judson:

Come, Holy Spirit, Dove divine,
On these baptismal waters shine,
And teach our hearts, in highest strain,
To praise the Lamb for sinners slain.

We love Thy name, we love Thy laws,
And joyfully embrace Thy cause;
We love Thy cross, the shame, the pain,
O Lamb of God for sinners slain.

We sink beneath the water’s face,
And thank Thee for Thy saving grace;
We die to sin and seek a grave
With Thee, beneath the yielding wave.

And as we rise with Thee to live,
O let the Holy Spirit give
The sealing unction from above,
The joy of life, the fire of love.

The pastor read from Psalm 40:1-4

I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the LORD.

Pads answered the same three short questions he'd recently been asked when he became a member of the church a few weeks ago:

Do youbelieve that JesusChrist came into this world to be thesaviour of the world?
Do youbelieve that heis the only saviour?
Do youbelieve that heis your saviour?

Then Pads was baptised (by sprinkling), 'in thename of the Father, the Son and the Holy Spirit.'

Pastor Dewi related how he recalled Pads moving from a state of really wanting to be saved, coming to a position of being sure. Indeed, for as long as he could pray intelligently, he'd pray 'Dear Lord and heavenly father, please save me'.
This was similar to Pastor Dewi's experience when he was 12. He could remember singing all manner of hymns to himself as he walked to and from school - a 'new song' had been given to him: a song of praise for lifting him out of the fearful pit of sin and death through the blood of the Lord Jesus Christ. Pastor Dewi recalled the blessed ten years or so that had seen my whole family saved, and here was proof that God is still blessing this family with his salvation.
For the hymns, Pads chose 'Amazing Grace', and, 'When peace like a river attendeth my way, or sorrows like sea billows roll, whatever my lot, thou hast taught me to say, "It is well, it is well with my soul"'.
Is it well with your soul? Are your feet upon the Rock, the Lord Jesus Christ? 'All other ground is sinking sand'.

The EMC trip

2011-07-16T20:42:00.001+01:00

Pads is still wearing his Ellen MacArthur tee-shirt. He had a really great time, we are so glad he was able to go and to stay. He was surprised at how nice all the people were and is in contact with one of the 'crew' via facebook. We're a bit slim on photos because Pads was nervous about using his digital camera and he lost the single-use film camera he was given. Anyway, we're told that some photos are likely to appear on the charity's facebook page. Until then, if you want to see the kind of thing they get up to and the yachts they use, have a look at: http://www.facebook.com/EllenMacArthurCancerTrust
Pads had the ample fore-peak cabin to himself which meant he could go and have a rest at any time. He was surprised at how much strength he had and he never needed to resort to that. In fact he only once needed additional pain relief, two paracetamol, in addition to the fentanyl patch. He went to bed early at 7pm the Monday night but was unable to sleep: the others were crabbing and he caught a huge single-clawed one.
They were blessed with fair weather. Pads was steering when they were in full sail hitting almost 9 knots. At Yarmoth they went ashore for donuts at the Royal Solent Yacht Club and a game of rounders nearby. They sailed on within sight of the Needles before turning back.
It was very memorable when the group were recalling their funniest moments of the trip. Dan had remarked how he thought the cabin bunks made the space like a grotto, and Pads chimed in that Santa is not bald and does not have a red beard. As the laughter was peaking, Dame Ellen, plus her (really nice) border collie called Norman, sneaked in and sat next to Pads. He was impressed at how 'normal' she was and remembered to bag an autograph for Rhys. Although he left that behind, thankfully the team sent it and his certificate on in the post.
Back home, Pads is back on the codebreakers and enjoying playing with the dogs Jack and Moses.

In good hands

2011-07-11T23:23:00.001+01:00

This is Dan. The latest report from him is that Pads is fine, went to bed early and then got up again to play Uno. It was all about orientation today, but they did manage to fit some crabbing in: Paddy's crab catching and handling skills are somewhat legendry in their own way...
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EMC trip

2011-07-10T21:24:00.001+01:00

Pads has been really looking forward to the Ellen MacArthur trip.
http://www.ellenmacarthurtrust.org
The picture is him wearing his new deck shoes, plus Uncle Rhys (not really sleeping :)
Note also the dish of snack eggs!
I am slightly astonished that he's gone, seeing as how he seemed to be taking a real 'tail-spin' a few weeks ago. But he's determined to go, and, as he showed on the trip to Heatherton, he can put on a spurt when the conditions are right. Plus the consultant is boosting his cortisol dose to zip him up a bit.
We figured 8.30am to join a coach from Cardiff would be too early for him. So he and Mum set off this afternoon for Spring Road Evangelical Church, Southampton. From there they'll stay in Titchfield overnight - the trip presented a great opportunity to visit Uncle David and Auntie Susan. Then Pads is due to spend 4 nights on board. Ally had quite a job to get all his medication ready. Apart from one of the LATCH social workers who knows Pads well, each boat has a Dr aboard. There will also be a couple of other children going who Pads knows. They all sleep on the boat so Pads can rise whenever he wants and the team are pretty confident they can accommodate his needs.

Asher's scalping

2011-07-06T08:39:00.003+01:00

It was great that Pads was able to visit the school in Machen again last night for Moli's end of year show - a rendition of My Fair Lady where she played the housekeeper to an enthusiastic audience.
Another item from the bucket list is for 'Asher to have a scalping'. This idea finally firmed up in Asher's mind and now he's doing it for charity. It is scheduled for the morning of Wednesday 20th July. Here's the link to the justgiving page: http://www.justgiving.com/ashertorrigwalt2011 ('torri gwalt' is Welsh for 'haircut'). Any support you can offer him would be greatly appreciated.

Risk

2011-07-02T22:21:00.001+01:00

The results of the scan came through yesterday. Pads was due to visit the hospital for a pre-chemo check-up anyway. His bloods are holding up well, he's handling the temozolomide and the dose can safely increase in future if they want it to. Pads was interested to know about the scan findings. We'd looked at the pictures and there was not much change from last time, but change there was: a slight increase in the swelling. The opinion from Birmingham was that the scan was not 'classic medulloblastoma', but it did look more like tumour than radiotherapy changes. Although the 'result' sounded uncertain, so some extent, Pads symptoms have been telling their own story for some time: the consultant did not waste any words telling him. He was ok with it, and went back to playing Risk with Llyr and friends. This game was much enjoyed and had been on the bucket list for some time. However, at dinner, when his left hand was failing him with the cutlery, he became quite upset and took refuge in his room.

Today it was the smalls' school summer fayre and Pads managed to get there for about half an hour. For most of it he sat and did codebreakers, finding the noise and bustle wearing.

Llansteffan

2011-06-29T08:41:00.001+01:00

Pads and mum have gone for a couple of nights in Llansteffan thanks to a friend who has a chalet there - fantastic weather for it! They won't be getting up to much though - Pads is intent on his code-breaker books at the moment. He was a bit tearful yesterday so the timing and nature of this trip is good.
This picture is him with the venerable Mrs Higham at the Ladies Meeting yesterday.

If you do facebook

2011-06-28T15:48:00.001+01:00

If you do do facebook, you might like to know that Pads has got an account on there now. If you're logged into Facebook, he's at:
http://www.facebook.com/profile.php?id=100002479368113

Back on the dex

2011-06-27T23:18:00.002+01:00

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.

Heatherton

2011-06-25T22:10:00.001+01:00

Saturday was slated as a slightly crazy day with Bo off to a Cubs Fun Day at 7:30am, Pads off to Heatherton at 8:30am, Ally off for a walk with her Marie Curie 'Walk for Wendy' partners, and Moli off with ATC for the Armed Forces Day. Various stresses, including homework and preparations for her part in the school show, meant that it made more sense for Moli to stay at home. But the others had a good day. We were a bit worried about how Pads would cope, even though this was a LATCH 'Brain Tumour Support Group' trip, so he was in the care of three social workers and a nurse. Yesterday he was really tired out and would have required lifting to get him anywhere by 10:30, let alone 8:30 - that's the fentanyl patch for you. But he was all action, and ate well too.

On bucket lists and travelling

2011-06-23T22:05:00.000+01:00

The kids were rightly incensed when they heard that Alice Pyne had been getting nasty spam messages. They wanted to send her messages saying how I'm in IT and they were certain I'd be able to do something to block all that negative stuff. It's been a while since I've seen Pads bucket list. He keeps his journal pretty private lately. The list contains fairly normal, even mundane, things really, with the exception of wanting to see his siblings become Christians... that's pretty rare these days, but we have a gracious God.
I'm reading Spurgeon's Autobiography at the moment - volume 2, 'The Full Harvest'. He'd been sent on a recouperative trip to Europe and, reflecting on all the marvellous sights and sounds, said this (p33):

If you cannot travel, remember that our Lord Jesus Christ is more glorious than all else that you could ever see. Get a view of Christ, and you have seen more than mountains, and cascades, and valleys, and seas can ever show you. Thunders may bring their sublimest uproar, and lightenings their awful glory; earth may give its beauty, and stars their brightness; but all these put together can never rival Him of whom Dr. Watts so well sang -

Now to the Lord a noble song!
Awake, my soul; awake, my tongue;
Hosanna to th’eternal Name,
And all His boundless love proclaim.

See where it shines in Jesus’ face,
The brightest image of His grace;
God, in the person of His Son,
Has all His mightiest works outdone.

The spacious earth and spreading flood
Proclaim the wise and powerful God;
And thy rich glories from afar
Sparkle in every rolling star.

But in His looks a glory stands,
The noblest labor of thine hands;
The pleasing luster of His eyes
Outshines the wonders of the skies.

Grace! ‘tis a sweet, a charming theme;
My thoughts rejoice at Jesus’ Name:
Ye angels, dwell upon the sound!
Ye heav’ns, reflect it to the ground!

(Amazingly they leave the following (final) verse out of the Autobiography... but it's in our excellent hymnbook!)

O may I live to reach the place
Where he unveils His lovely face!
Where all His beauties you behold,
And sing His Name to harps of gold!

This transfixing, transporting view of Christ does not fade with the years and it is impossible to become familiar in the way that those who live near the world's natural wonders do. It is a view that can be seen perhaps most clearly from the bed of sickness, poverty or prison, as His people have testified down through the years. If you have not seen this view, as is said, you havnt lived! You must not die without it.

Pads is his usual helpful self around the house. He's always the first to offer help with putting clothes away, make a cup of tea, tidy up. Moli'd asked him if he had some lined paper and he was up and down the stairs to make sure she had it later, even though I'd told him I had seen her writing on some!

dosette

2011-06-22T23:06:00.001+01:00

Pads says his left hand is getting more trembly - to the point that he finds it pretty useless. It's not like that constantly, just when he's trying to use it.
Ally got him a dosette box to try and organise all the pills he's taking. It takes an age to just prepare two days worth. But there's little point doing more than that when the doses change so often. One needs to be taken on an empty stomach, others with food... Complicated! At least the morphine will drop out of the equation tomorrow when he moves onto fentynal patches instead.
He's in good spirits though and we both enjoyed getting the bible study live streamed from church.
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