Raw footage

It is with some trepidation that I share the entire video interview which Padi gave for the LATCH film. Only a couple of moments were shaved off, but these extra bits give a real insight into his suffering and paint an even stronger contrast with the 'lighter moments' in the clip.
Ben, the film-maker, kindly supplied us with the uncut footage via the video-sharing site called Vimeo. The interview was conducted by another member of the Brain Tumour Support Group.

Padi LATCH interview with permission: Ben Ewart-Dean (education).

BTSG film premiere event in Penarth Pier Pavilion

We had been looking forward to a viewing of the film made earlier this year by Pads and his Brain Tumour Support Group. LATCH received a grant from Children in Need and this was used to pay for several sessions with a film-maker. Padi was too ill to travel to the first two as these happened in Penarth but he did shake himself down and managed to get out to the final shoot over at the Heath, complete with syringe-driver and shades (because of his double vision). If you can saunter from a wheelchair, that's how he arrived - hailing his friends with a big wave! This was typical of the way he regularly defied our most extreme expectations of how someone as ill as he was would behave. The film is still not opened up to public access yet - when it is I will post up a link. We'd had a preview which was just as well because seeing him on the big screen was pretty challenging. The way he talks about his illness is spell-binding. It is a side of him that, as carers and parents, we had not seen very much of.
I took the afternoon off work and the children finished school early in order to attend the event which was staged at Penarth Pier Pavilion (link to their public facebook page). This iconic building is in the latter stages of remarkable and much needed major renovation. We were pretty inspired by the community-spirited vision for it's ongoing use. For example, Room 617, the observatory, is dedicated to Guy Gibson, CO of 617 Squadron, as a meeting place for sufferers of Post-Traumatic Stress Disorder (link to BBC News Report about the Pavilion and Gibson's links with it). Although the cafe will not be ready until spring next year, a really excellent buffet was provided. LATCH are very keen to use this ideal venue for further events.

Photos of Padi

I've finally completed a mega-set of photos of Padi from his whole life. This link takes you to the view of them:
http://www.flickr.com/photos/amoebaswarm/sets/72157634880467745/
We were reading with the family yesterday, when Kay from LATCH called. She was due to visit, to check on us and drop off another charity cheque.
We read again in Matthew 26:

63 But Jesus held his peace, And the high priest answered and said unto him, I adjure thee by the living God, that thou tell us whether thou be the Christ, the Son of God.
64 Jesus saith unto him, Thou hast said: nevertheless I say unto you, Hereafter shall ye see the Son of man sitting on the right hand of power, and coming in the clouds of heaven.

Now, as I was saying in a previous post, there were two levels operating here. The reality as experienced by everyone, and a spiritual reality which transcended the merely temporal. Jesus famously remained silent until, when challenged as the high priest did. Being God, he could not deny himself. This is one of the few things that God cannot do. The word 'hereafter' in his reply seems strange though, as if the people present were just about to see what he describes, if not that day, then soon. Nearly 2000 years have passed and all these died without seeing, 'the Son of man sitting on the right hand of power, and coming in the clouds of heaven'. Was Jesus simply wrong? Even though his terrible death by crucifixion was to happen later that day, Jesus could see past that. Time is such a strange thing compared to eternity. The brief moments of our lives slip by illusively and we're left with fragments of memories (if your memory is anything like mine!). Years turn into decades and then we pass on into eternity. With eternity in view, we are all just a few moments away from the culmination of all things, when we will all see 'the Son of man sitting on the right hand of power, and coming in the clouds of heaven'. Are you ready, are you saved?

Shared viewing

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

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

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

Made it

Although he was very tired and needed a breakthrough pain-killer before and after it, Pads made it out to the Brain Tumour Support Group meet today over at the hospital. We rolled him across in the wheelchair, while another family had driven from Carmarthen to attend.

The group have met twice recently to make a video about LATCH and he's wanted to be there but was not well enough. Today he was determined to go and has given an interview so will be featured in the movie. It also meant the parents were able to catch up a bit in the concourse nearby.

The need for feed

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

Back from Porthcawl

We've returned from a caravan in Porthcawl, just 40 minutes away. The caravan was organised by LATCH, provided by/in memory of Emyr Owen who passed away in 2009 (you can buy his children's story book online to help support LATCH). Being near home was important in our being able to go 'away' at all at this stage of Pads' illness. It allowed Ally to pop over to check things out (especially the heating!), make the beds, etc. There was less risk with the shorter journey itself and knowing we could 'abort' and return home easily if need be. We curtailed our time away, for various reasons, by traveling up on Easter Monday, coming back yesterday. Pads was reluctant to part with home comforts as we approached the time of departure but the caravan was roomy enough for him to have his own space, which he used almost as much as he would have at home. The caravan and its thin walls made it feel like we were more together.

More photos on Flickr.
Thankfully the week passed without incident. The weather was bright but cold, and colder still in the north-easterly breeze, so we made glad use of the caravan's efficient heating system. We kept things simple, relaxing with a book, game or DVD. Moli's been trying to put in 4 hours a day on GCSE revision too. On Wednesday the siblings shared a hot-tub at Ruth's. Just seconds from the beach, it is easy to imagine the place teeming with families on a warm summer's day. In contrast, following one of the stary nights we took a dawn walk on the sand. Removing my deck shoes to cross an especially wet patch I noticed each step made a sandy impression through a layer of thin ice! We topped off the holiday with a cinema trip on the way home at McArthur Glen, Bridgend. Just mentioning this topic in conversation outside his room was enough to arouse his excitement and he was up and dressed by 9am! To wile away the hours we wheeled him down to the Trecco Bay sea front. This was enjoyable if wearing, and he returned to bed until we left at 3pm.
Pads called for a 'melt' at 6:15 this morning and had another 3 in fairly quick succession. Each melt is enough to ease the pain for a while but this many cause him to become slightly uninhibited, often with comic effect (e.g. starting to whistle Christmas carols).

Pod's Christmas visit

So Pads is operating on 50 microgrammes of fentanyl now. He still had some pain this morning but it calmed down and he still made it to school and a good session with the tutor.
I forgot to mention that Pod Clare was back last week, thanks to LATCH funding. This time it was with a beach-comber art Christmas theme. Here's a sample of what they got up to.

 LATCH have also sent us a small cheque for 'Christmas expenses' which is great!

Outlier

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

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

New in from Pod&Pad

When it was suggested originally that he might like to get some quality time in with Pod, Pads did not seem that keen, he was worried about 'more mosaics'. Well he seems to have put that one firmly to bed. This latest effort is an African mask, brought over to us today by Kay of LATCH. Stunning!

Pad and Pod's Hands tapestry

Pod Clare was over again yesterday (13/9/2012). We had instructions to get some jazzy material and draw around our hand: these the raw materials for Pad and Pod's latest creation. www.podclare.co.uk
Each of the hands is given a colour theme. For instance, mine is slightly colour-blind. Boaz's is stark, like his brown eyes... I'll leave you to work out the rest ;)
Pads has just one more visit left after this, all sponsored by LATCH

Pads has been enjoying a less mobile existence since the holidays ended. It's not always easy to work out what's for the best in terms of activity and encouraging him to engage in it.

Pain returns

Pads is getting pain this morning above his left eye which is registering about a 6 or 7 out of ten - the highest it has been for a long time. When shining a torch into his eye, the pupil shrinks and then widens again. He's also getting a fuzziness in a patch in his right eye.
Yesterday he could be found reading his inscribed edition of 'John Knox' by John J Murray. He says the print is a good size. This is the first book he's tried to read in ages.
LATCH had organised a trip to the St Fagans Open Air Theatre today, they were doing Pinnochio. Pads preferred to play Risk later with his cousin, but that is now looking unlikely. He was more positive yesterday about the prospect of attending a 'theatrical makeup' course in the near furture, again organised and paid for by LATCH.

Thanks again LATCH!

Thankfully Pads has not got any pain today. He's got visits from the psychologist and tutor lined up. New fentanyl patches and a couple of paracetamol did the job for him last night - he popped 9 pills all in one gulp! He's had little bouts of pain in the past and probably this is just of the same order. I was helped this morning reading four simple powerful words: 

'Fear not: believe only' (Luke 8:50)

As we turn the calendar to July he's got plenty in prospect: another visit from Pod, re-visit to Bluebells, Ellen MacArthur trip, and the Summer Conference (hope you can come?). And then there's the Olympics. A long time ago this came up when we were thinking of an end of treatment charity funded 'dream'. Pads had said he'd like to go to 'the Olympics' but this seemed a long and uncertain way off. We had a fantastic trip to Florida instead. The last time the Olympics were on we were moving through France with Padi's mystery illness happening. Everyone was fascinated by the coverage we picked up in the 'Formule1' motel, even though it focussed on the French interest. I mentioned this to Kay. She's been raising money for LATCH by accepting donations for the loan of her torch (picture below of Kay with a torch official when she did her 'carry' back in May). This makes a lot more sense than selling it on ebay as some have. Her torch has been a fantastic marketing tool, making appearances at schools, etc. with people paying to have their photo taken holding it. One Cardiff jeweller is renting it for their shop window while the Olympics are on. Anyway, Kay asked LATCH to fund a small grant to buy a new telly and the cheque arrived last week. Pads was mystified by this, 'but we've already got a telly', he said. In fact we don't even have a licence since we do not watch broadcast TV or live footage on the Web. So the plan is to get a licence for the Olympics only and that gratifies everyone's intentions.

Pads and Pod

It was great to speak with our nurse this morning about all kinds of issues concerning Pads' care. We talked through some options for 'learning' which P has recently shown an interest in. The idea is a bit formative at the moment, but we really want to enable him to reach his potential without our inhibitions or expectations limiting what he attempts. This afternoon was given over to art with Pod. She'd helped the Brain Tumour Support Group create a mosaic and Kay (LATCH social worker) had the idea of funding her to spend individual time with Pads. On her first visit, after they'd working up some ideas, out came the paint. The name Jackson Pollock had been mentioned so I had visions of a new-style and far more colourful garden, but the process was a lot more sedate than that. Nevertheless, Pads was really pleased with the whole experience and rightly delighted with the result.

Here's the finished article:

We're pleased that the PSP-Go went for the respectable sum of £53.23 - thanks to Catherine and Malcolm for organising that for us. That money goes straight to the 'Kids Cancer Charity'.

Kay's Day

We're just delighted that Kay Richmond got to carry the Torch today. Sorry Matt (Smith), you're just an actor. Kay's the real deal (can just about be seen in the photo below on the far left). On Thursday, she visited us again, bringing a photo of the last Brain Tumour Support Group trip to the Botanic Gardens AND Pads' mosaic that he created with the help of 'Pod' Clare. Kay confirmed that she's secured funding from LATCH to pay 'Pod' Clare's expenses to visit Cardiff and do some further work with Pads. Kay had also got her husband to grout the mosaic for Pads!

We're enjoying the fine weather and a positivity that's 'in the air' these last couple of weeks. Yesterday Ally had a meeting with the consultant who warned against getting carried away. With Pads almost fainting in the hot tub on Thursday, we get these little reminders which help to keep our feet on the ground.
Many have prayed for complete healing for Pads, and still do. But there's something more amazing than miracles: glorifying God in the midst of 'dark events'. We're very mindful of a dear friend Lynn, who has languishing under illness with the most incredible joy and peace in believing. We had a beautiful quote given to us the other day from Spurgeon's sermon on 'Grieving the Holy Spirit':

Remember how much he loves us when he helpeth our infirmities. Nay, not only doth he help our infirmities, but when we know not what to pray for as we ought he teacheth us how to pray, and when "we ourselves groan within ourselves," then the Spirit himself maketh intersession for us with groanings which cannot be uttered—groans as we should groan, but more audibly, so that our prayer, which else would have been silent, reaches the ears of Christ, and is then presented before his Father's face. To help our infirmities is a mighty instance of love. When God overcomes infirmity altogether, or removes it, there is something very noble, and grand, and sublime in the deed; when he permits the infirmity to remain and yet works with the infirmity, this is tender compassion indeed. When the Saviour heals the lame man you see his Godhead, but when he walketh with the lame man, limping though his gait may be; when he sitteth with the beggar, when he talketh with the publican, when he carryeth the babe in his bosom, then this helping of infirmities is a manifestation of love almost unequalled. Save Christ's bearing our infirmities upon the tree and our sins in his own body, I know of no greater or more tender instance of divine love than when it is written, "Likewise the Spirit also helpeth our infirmities (Rom8:26)."

Casualty

On one of the busier nights of any term-time week, we were grateful to Jane, our visiting nurse, who was able to take Pads to see the making of Casualty, the latest event for his Brain Tumour Support Group. They really ought to think of a better name for it than that. Pads has suggested 'The Fat Martians' but that's not stuck for some reason... Production of Casualty has shifted to studios at Cardiff Bay. It is a huge facility and mimics a small hospital, including an array of ambulances. The prosthetics were fascinating, used to mimic all the gory bits that couldn't really be done on an actor. For example, there was a leg with a bone sticking out of it which could be manipulated off camera using a stick as the repair work was filmed. There was a mechanical new-born baby, with pipes that made its chest rise and fall. There were a whole range of babies in fact, "fat ones, thin ones, some as big as your head", to quote Pads. As they moved to the actual film set, Pads was given the director's chair to sit on. It was all so realistic, they even had a genuinely cold cup of coffee in the Ambulance bay. On the way out they passed through the extremely dark Pobl-y-Cwm-Ville. He was away from home for 3 hours in total, until 7:30pm. Perhaps this explains why he spent the whole of Wednesday rooted to his bed, listening to Dune and trying to crack Professor Layton challenges. Although it was tempting to get that for him for Christmas, the price of it has plummeted since then.

LATCH trip to 'The Sound of Music'

Carmarthen Youth Opera were performing 'The Sound of Music' this week at the Lyric Theatre and LATCH paid for tickets for us all. The LATCH party had 'nibbles' beforehand and then we were invited up on stage afterwards for a chat and a photoshoot with the cast. We are very grateful for the opportunity to attend and everyone thoroughly enjoyed it - Pads was still talking about it just before we said goodnight!

Bruce Airhead strikes again

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:

Happy 14th Birthday part 2

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.

Into December

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.