Twice again

Following up Sunday's effort, Pads was back at school again this week, this time he attended twice, one hour of maths on Tuesday and one of history on Thursday. It was good. Pads doesnt have to walk too far. History is nearby and so is Maths. His welsh is not as hot as it used to be so that is an extra challenge but with concentration he can get pretty much all of it.
On Wednesday we celebrated Moli's 16th with a meal at an excellent little place called Troy. Pads had the 'wings' - it's pleasing that he wants to to join in enjoying the food at these get togethers.
Tomorrow he hopes to go to the Chippenham Conference on the minibus. Departure time is 9am and it's a full day so it'll be interesting to see what shape he's in by the end of it.

Taking the bus

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

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.

Happy 14th birthday

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

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.

Ethical gifts and counting the costs

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.

a happy birthday

Yes - it was a happy birthday. Pads was up and buzzing early having had a lovely sleep. He'd crashed last night after laughing so much with his mates, but it did mean being in bed at a reasonable hour... thanks to Ruth and Rhys who brought him home.
Presents, many suitable to someone good with their fingers, included an electronics kit, a puzzle ball, a wasgij, airfix, DS puzzle-game (Pandora's Box), cardboard models, a snotty slime clock and some wood carving tools. He was a bit taken aback by the latter, but I'm confident he'll grow into the idea - after all, he's twelve now.
We had a great time with all of Ally's side of the family who came over the bridge to share a meal at the local Harvester.