Happy Birthday

We approached Padi's birthday with some trepidation but the prospect was made easier by the memorial service at Glan Taf. This solved the awkwardness around what we would actually do when we might have spent some time looking at each other wishing we could bid Pads a happy birthday and enjoy opening presents with him.

Pads was amazed to get a new DS in December 2012

The CofioPadi group, who have raised over £4000 by now, were instrumental in organising a very sensitive and emotional tribute to Pads. Around ten of his friends lined up to read their own tribute (I encouraged them to transcribe and share through their facebook page but no sign of that yet). Ally also had a chance to say something. She noted that many have said what a 'saint' Padi was, although those closer to him could all recall moments when that picture did not quite fit. When he was small and out shopping with mum, Pads vanished from sight. Two feet sticking out from under some baskets gave him away. There he was, gorging a large chocolate Santa, cheeks bulging. Fast forward to early last year and this event came back to haunt his conscience. Newly awakened to the holiness of God, he knew that this seemingly trivial sin was offensive to his Maker. One theft makes one a thief. One lie makes one a liar, just as one murder makes one a murderer. You may be forgiven by the person you stole from or lied to/about. But what can you do about your conscience? What do you do with guilt? Some try and drown it or tell another human about it. Nothing can really erase it. The reason for that is that the essence of sin is that it is against the Living God who sees all and will hold you to account. Be sure that God takes you much more seriously than you take him. But God is gracious and affords you a Way, a Truth, a Life, by which you can know peace instead of the raging of conscience, no matter what you have done, we can confess it to Him and know the peace of God which passes all understanding. That is grace. How thankful we should be that the Second Person of the Trinity came to live in accordance with his own laws, becoming the spotless Lamb of God qualifying him to bear the due punishment of our sins on Calvary's cross.
After Ally, Pastor Dewi Higham read a few verses from Padi's Psalm (46) in Welsh and prayed. It was a lovely service - great to share it with the whole of Year 11 and others, such as Miss Evans, the Head from Mynydd Bychan primary school and Padi's nurse.
After the service, we went to a garden where everyone wrote on a balloon and released it into a clear blue sky. You can watch a video of this on YouTube.  After that, we were invited back to a comfortable room where we had time to relax and chat. This was important for the children especially, many of whom were deeply affected. It was characteristic of the outstanding way that Glan Taf have looked after the children throughout Padi's illness, his passing and beyond.
It was time to move on. Ally and I visited the grave where roses placed by one of Padi's friends were still in good shape. We co-incided with several other visitors that day and had so many messages of support - the house resembles a florist again! Ally and I 'chilled' for the afternoon - Padi would have approved of our visit to the hot-tub. He would have also liked to join us for the second installment of 'The Hobbit', but that was not to be. Padi was excited at the thought of watching these films, being something of a Tolkein buff he enjoyed the first one last Christmas. However, previously the news had leaked that the three films were completed but would be released annually. This grated somewhat as rather grasping of Hollywood and yet it was another poignant illustration of how Padi had to come to terms with his term.
We reached the end of a day that we'd been dreading, grateful to God and all our comforters for another good day. 

Space bowl

Last night I brought up the subject of a visit to Cardiff International Pool with Pads and was astonished to hear that, while he was happy to think about bobbing about in the lazy river, he was genuinely excited at the thought of the blue Space Bowl slide. I could hardly imagine him climbing the several flights of steps, let alone what would become of him at the bottom. When Pads gets his head around doing something though, it's best to run with it and suspend disbelief. Ally chaperoned him around the pool for 40 minutes before the Space Bowl opened, so it was the 'final fling '. Getting his independent spirit out, he insisted on going first so Ally had to look on as he moved towards the opening at the top and then he was gone! On that slide you slide around and around about four times before your decreasing speed leaves you to plop through the hole in the middle.  Pads tumbled out of this head first, claims he drowned three times. No regrets though. He was pretty subdued on arriving home and is not in a rush to go back, but maybe in a few weeks...

Shiny

Today's wheeze to get Pads out was that we were going to pick up 'his car'. Pads was finding our old faithful Nissan Serena pretty uncomfortable on long journeys. Around the same time that he was expressing this, some marketing arrived through the post about Motability. We'd discounted this before because we already have a big enough car, and to get something of the same proportions would require quite a large down-payment. However, Ally investigated and found that we could get a decent vehicle for about the same as we'd get for selling the Serena. The advent of this day has caused quite a high level of excitement, excitement that was fully gratified by all the 'bells and whistles' the new car features, each one met with cries of 'awesome' and 'cool' as I drove the smalls home from school. As the consultant said last Friday, hopefully this car will encourage Pads to want to go out for trips, instead of the Serena being a dissincentive. That old car 'owes us nothing'. It has been a real work-horse, and still has plenty of life in it, albeit fairly uncivilised... any offers?

Positive

Pads has been worried by terrible itching today. This came over him last week and having a bath was enough to sort it. But this time he's had all the drugs too and finally the piriton has given him the relief of sleep.
He's had a great weekend. When we found out that the Brain Tumour Support Group trip was to St Clare's near Carmarthen, that seemed to be a big ask. When we heard they would be out all day, departing at 9:30 and returning at 5:30pm we could hardly imagine him coping. When we put it to him, he simply replied, 'I always go'. Fair enough. On the day he not only went and had a great time (albeit sleeping on the bus), when he came back he went out to the fellowship tea organised for Pastor Bob Dickie and his wife Mary. Even after that he was lively.

We thought he'd pay for it the next day but he was fine, and came out for a remarkable evening service where Bob Dickie preached about the resurrection. He pointed out that no-one had ever successfully challenged the historicity of Jesus' resurrection and that we were left with no excuses, since Jesus rose from the dead, we are compelled to accept his words as truth. But what a glorious hope we have, whatever condition your body is in tonight, 'we know that, when he shall appear, we shall be like him; for we shall see him as he is.' 1 John 3:2

Wales v France

There were lots of mixed feelings about getting tickets for the match today. It seemed difficult to imagine that Pads would be up for sitting through a game. We heard on Monday that tickets were coming our way. The WRU Charitable Trust distributed them to Stepping Stones Care Services and then on to LATCH. The tickets were for a wheelchair space and attendant which posed a slight ethical dilemma if, in the event, Pads was not able to go. Various suggestions of who could fill his seat were made. Although this would have been educative for the person in the chair, that was never going to happen. When I finally checked with P two hours before we were aiming to leave it had not crossed his mind that there was any problem, we were going. We had good seats, as you can see. It was a thrilling match too and the Welsh side played with great composure in spite of the huge expectations of the crowd. Pads coped well enough, although his good ear took a bashing from the yelling of the crowd to his right.

This time last year we were in Florida (links to post from March 2011 with the photos)  - seems quite surreal. We're so grateful for all the memories from that trip. Here's one from the Kennedy Space Centre!

Warning - not for the sqeamish

Pads had great fun today with his Brain Tumour Support Group chums. They're a really caring group and love to have Padi along. The group gives him a completely different circle of people to be with, whatever they actually get up with, he really enjoys being there.
The idea for visiting 'The Theatrical Makeup' studio emerged after the road-show version were engaged for the LATCH party in January. Pads was not in very good form that day. This time was also better because it was a dedicated workshop with friends. Initially we were concerned because the start time was rather early, 10am, and, while we were late arriving, it was only by 10 minutes.
The next time I saw him at 2pm he was wearing two very gory wounds. Apparently they'd been inflicting these on each other for most of the time I was away! Bearing in mind yesterday's symptoms I left a few paracetamol with the LATCH social workers, Dan and Kaye (big thanks to them!), but he's had no extra pain all day. It is strange how hot he feels sometimes... warm enough this morning to appear downstairs in shorts. This was just as well because it meant he could get a really juicy wound on his shin.
He wasn't long home before heading off to see cousin Llŷr. He was still going strong until after his bath (leaving his fentynal patches on in a warm bath can speed up the drug's release!). It'll be interesting to see what effect all this activity has on him tomorrow.
In other news, Dan says he's had the 'OK' to go on an Ellen MacArthur cruise this summer.

Putting the calendar to work

It being half term, yesterday, Pads took a trip to visit Dan, one of his old school pals. He was out for 7 hours, including a trip to the dentist and McDonalds for a donut.
I was looking around Pads room on Monday morning and noticed his certificate from the Ellen MacArthur trip last year. When I suggested he might like to go again, this was recieved with considerable enthusiasm. Then I thought, we should be using that calendar. A while ago, our nurse mentioned the word 'June'. That came as a bit of a shock, to even think that far ahead, but it occurred to us that living for the moment can wear a bit thin. Pads has a couple of dates coming up with the Brain Tumour Support Group and so I've penned these onto his Chick-fil-a calendar. This is positioned right in front of him and now displays some things worth looking forward to.
The dates in the picture are for sticky toffee pudding, which Ally's planning to make for a meet-up tomorrow night... also on Pads calendar, although he's unlikely to eat any of it.

Swear box

Today the play therapist visited. Pads had already declared what he wanted to do and it wasnt playing Skip-Bo. He finds it difficult to find the right words and he gets frustrated with himself when things come out with more venom than he'd intended. This is particularly true when watching a film. He's a bit like my dad watching the rugby. IF you were in the room, you didnt dare breathe! His siblings, however, chatter and make comments all through and this is irritating. Pads had the idea that there could be a type of 'swear box' that everyone could contribute to if they spoke up while watching a film, but also that HE would contribute to if he loses his cool. The exact cost of the fine is yet to be determined, remembering that Bo is especially short of funds, and Moli's got the job of decorating the box, so it could be a while before it sees any action.
In other news, today Pads was in very good form. He was with his mum in the car. While passing McDonalds she asked him if he wanted anything. 'Donut' came the reply and so he ate a donut. This has to be the single biggest 'meal' he's had in weeks if not months.

It's arrived!

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!

Enjoying life

We had a superb view at the match last night. I was really impressed by the steward who spotted us with the wheelchair and escorted us right to our seats... which was quite a feat. It is energetic enough to push the chair through town filled with the joyful crowds, but the determined milling about inside the stadium is very tricky to negotiate.
You can read plenty elsewhere about the match. We enjoyed it although I think it looked like pantomime compared with Southern Hemisphere rugby.
It did get very late, so we've had a lazy morning. The smalls have gone off to a friends house now. We thought it was time to ask Pads if he at all wanted to know about the scan result. Turns out he forgot all about it. He's so well and happy with life, planning a really quite full week of school to come. We're about to go swimming and he's been dogwalking with Moli this morning. It would be great to focus on living life to the full, and the holiday on the horizon helps with that. If you want to talk about the scan or anything related to that, please talk to Ally or myself.

Moving on slowly

Nice easy day for Pads again today. He did homework, listened to an audio-book, watched a bit of, 'The Lavendar Hill Mob', and then went for a visit to McDonalds for 2/3 of a cheese-burger. His eating is picking up slowly, it's more varied and doesnt have to be strongly flavoured: some rice-crispies, 1/3 peice of toast, then a few cheesy pasta quills at dinner time.
He's been keeping himself occupied by taking on small projects: writing the placenames with caligraphy for the wedding reception next week, designing an emblem for the Queen's Jubilee (having snatched at a bit of Blue Peter on a rare visit to hospital), and today he was designing a Christmas card.

Trip to IKEA

I'm sorry to have delayed getting a post up on the blog. Thankfully there's been little to report apart from steady progress. He hasnt been sick since Friday morning, but that's only twice in a week. At a previous clinic the consultant had stopped the Urso, a drug to protect his liver from damage during hi-dose chemo. We are also able to stop his potassium supplement, although the sodium needs a boost: he's getting 8 ml of that a day because his kidneys are still leaky.
At the clinic yesterday he was being lined up for two units of blood next week, to boost his HB in preparation for radiotherapy a week on Monday.
Pads is slowly building up his stamina. This morning he was dressed before me and started to do homework! He was determined to get to the bottom of the long division page so that the tutor would 'change the subject'!
We were able to go on quite a long trip out today as a family to IKEA for dinner to celebrate Moli's birthday (on 10/10/10!), and to get a few things.
After that, a friend and I went on a training walk. We're hoping to do the Beacons Way next Spring to raise money for the charities Pads and family have benefited so much by over the past two years.

On the up

I think it's fair to say that Pads is on the up. He's quite perky, playing quite a long bout of conkers with his siblings yesterday. He doesnt get ill (much) and is just slowly wanting to eat a bit more. He's been fancying some shreddies and so a box was dutifully bought. Last night he ate 11 shreddies, but at least that was on top of his attempt at eating dinner. Today it was shepherd's pie, and he was out of the house for the family meal so asked mum to save him some. Mum and Ruth chorused, 'An egg-cup full?' - 'No!' 'Two egg-cups full? - 'No! A portion'. In the event he ate about a third of his portion... probably amounting to three egg-cups full.

Sensing a change in the climate

I'm pleased and thankful to say that it feels today like we've turned a bit of a corner. There was only one disturbance last night, nothing major. Last evening's water tasting was followed up this morning by some tea with the tutor and, later on, sampling some foods. His sense of taste has all-but gone, so he's wanting REALLY tasty, but not sweet, things. He tried a (curried) meatball and a (salty) hula-hoop, but neither of these registered... at least he was willing to try. Generally he's been bright and in good spirits. We enjoyed a visit from the specialist chemo nurse who thought he was doing really well. We've made the move back up to two bottles of the feed too, so hopefully he'll have more energy.

Nice trip to Bristol and Bath

Sorry about the lack of updates over the last couple of days! With the other children jetting off on different holiday activities, it was great to be able to take Pads on a short break to stay two nights in a Bristol hotel. We've learned pretty well what he can cope with and, even though we didnt take the wheelchair, we managed to avoid wearing him out. This is the more remarkable seeing that we fitted in a trip to Bath on Monday and quite a bit of Bristol today. I find it difficult to relax until we've completed the days activities, wary that he could nose-dive at any moment. But this is a time of increasing health - even his appetite and taste is returning.
Yesterday we took the train to Bath and hopped on did the two City Sightseeing bus trips, as well as having a wander around Bath Abbey. Pads had said he fancied Coke with a scoup of ice-cream in it a couple of days ago and this wish was granted in a very nice shop. When we got back to Bristol we popped for a kebab and then on to watch Toy Story III, which was excellent.
Today it poured with rain a lot of the time so @bristol was crammed - we tried and failed to get a parking space, opting instead for more traditional fare: Bristol Cathedral, the Cliffton Suspension Bridge (twice, the second time in the sun!), and the museum/art gallery. The latter was ideally situated for our choice of evening meal, a relaxed affair at Pizza Express. One of the highlights of the day was seeing Sue Symonds work, 'Creation', at the Cathedral - staggeringly beautiful in detail. Art like that is only really surpassed by the creation itself. It always amazes me that anyone could argue that the cosmos could come into being without any creative intellect... 'the invisible things of him from the creation of the world are clearly seen, being understood by the things that are made, even his eternal power and Godhead; so that they are without excuse: because that, when they knew God, they glorified him not as God, neither were thankful... and even as they did not like to retain God in their knowledge, God gave them over to a reprobate mind' (Romans 1:20-28).

Nowhere near hospital today

Today was fairly normal! Just before we'd taken Bo to catch his lift to Cornwall, Pads went to visit with his best pal until the afternoon, including eating a chicken burger. After that we visited the library and he spent most of rest of day reading Animal Farm - they still have some good books there... but dont bother looking in the children's section. He couldnt be coaxed out to a dog walk in the park, would have missed a chat with Moli if he had. But he did eat a bit of dinner. Intake for the day could have hit 300 calories!

Nothing growing this time

This morning the team decided that there was nothing serious growing in the blood cultures so P was free to go, after the noon dose of antibiotics. There was a (very) long farewell in progress by the time he finally arrived, with our Scottish friends returning home after staying with us for the conference. It is Asher's birthday and it was great for the brothers to have some time together in the afternoon playing on the new wii game. This evening we got pizza in and they watched a film together - it felt really quite normal.

2 services, 3 cookies and most of a crumpet

Pads has been lively (and lovely) all day. He kept Mrs Higham company in the newly equipped quiet room We've moved the creche out of the small kitchen at the back of the church to the church hall and installed video relays in both rooms. They both really enjoyed the services together.
We had a relaxing afternoon, visiting with Mark and Hannah. Pads was going strong all day, and although he ate very little (3 cookies and 7/8th of a crumpet), nothing was going to stop him going to church tonight too... and what an amazingly winsome sermon it was too! (hasnt been uploaded yet... but watch THIS space). He reaches a certain pitch of wellness and it's slightly disconcerting how downright entertaining he can be.

On the sick (soon)

Pads was amazingly cheerful today. Last night I was dreading how he would even sleep, let alone face up to the injection this morning. He was hardly troubled in fact, just 'ouched' a bit and then he was back to joking. He lasted well through the day - even to being able to come with us to Moli's end of term school show, which was excellent!
I popped along to get a repeat prescription for myself this morning. I ended up having quite a chat with the Dr., coming out with a sick note for 2 months from next Monday. This is the first time I've been in possession of such a thing. These new forms have some flexibility to allow me to do a bit of work at home, if I want to. But the main thing is that it gives me/us some breathing space for the weeks ahead.

Fast over :-)

Fast over :-), originally uploaded by agent_mikejohnson.

We were all greatly relieved to see Pads looking so well after his operation today, especially because he could have been pushed onto tomorrow's list after a cup of tea (with milk) at 9:30 delayed the surgery by almost 2 hours.
So the PEG tube (George) has been banished, replaced by a discrete Mic-key button. He is determined not to name it, especially not to call it Mickey, after realising that even the consultant was referring to the PEG as George!
Instead of the PEG tube, he now has tubes down his left-hand side from the Hickman line. In the lift going to Day Surgery the nurse told us that Hickman lines are very expensive, in the order of £700.
We should find out the results of the lumbar puncture tomorrow or Thursday at the latest. He was always likely to stay in another night, not least because he's due a kidney function test (aka GFR) tomorrow first thing.
Meeting another couple from Aberystwyth on the ward, we were struck again at what an advantage we have living and working so close to the hospital. Their little one has to go all the way to Carmarthen if he spikes a temperature!