Balmoral trip

Leaving Ally (jobs) and Pads (recovering) at home, the rest of us went to Ilfracombe on the Balmoral with Steve, Sally-Ann, Sarah, Nia, Tim, Anwen, Llyr, two Portugese, and a the soon-to-be-wed Jo and Tim. Pads is still feeling pretty rough.

Race for Life

Everyone had a great time at the Race for Life.
Thank you to everyone who supported Ally, Ruth and Moli. They took a 'powerwalk' approach which was energetic enough to greatly assist a good night's slumber. However, Pads feed pump has broken and the company was willing to send out a replacement tonight so we thought we'd better take advantage of that since Pads has only had the end of a battered sausage and half a chip since this morning. Yes, it's been a better day for him. Another slow start but all he missed in school was sex education, the very mention of the word appalls him. What a stupid society we live in that on the one hand robs children of any innocence (especially through marketing and media) and on the other hand wraps them up in cotton wool and red tape. After a short meeting with the Children's psychologist, he had an hour or so in school before going out with the others to the Race for Life (Rhys wasnt quite as well as this picture makes him look - poor thing).

Poor Ruth and Rhys

Al was filling me in on what R&R have been though over the last week or two. Rh needs minimum 4 litres of water and 1500 carolies per day - Ru's job is to somehow get that past the broken glass that is Rh's throat, where they zapped because that's where the tumour was - it's all sensitive soft tissue there, unlike where P had his boost, to the back of the head. Radiotherapy really kicks in two weeks after you start getting zapped so Rh has been bed-ridden, on the heaviest pain relief for a fortnight, apart from feeling plain abject terrible. It's massively stressful for Ru.

Meanwhile, back at the ranch, we had an undisturbed night and the kids have been having a long lie after a hectic week. There is more risk of the pump alarm going off in the night for a blockage with the PEG tube which flexes into a kink quite readilly, so that's something else to account for before we lay down at night. The PEG tube entry site also needs more TLC than the NG tube: it has to be rotated each day and cleaned - slightly freakish but we're getting used to the idea and basically we're in a much better place with it than before with the NG tube.
Yesterday Pads made it into school for a few hours but one of those was over lunchtime when he is most valnurable as he doesnt go in to eat with his peers. He finds it exhausting to have to talk to naturally inquisitive kids. He asked one of these politely to leave him alone but someone thought this kid was bugging Pads and got all protective. There were tears and acusations flying around. It all settled down but just goes to show how easilly how fraught things can get in the playground. But it was mainly a good day with the boys excellent reports coming in: each commended for bravery (P), excelling at everything (A), sunny personality and effort (B). M's report came through last week and she was also warmly commended by each teacher. So, to celebrate, we went for a burger and to see Ice Age 3 (3D) which is a really funny film. We were on a tight schedule as B had to be picked up from Beavers on the way and just 10 mins before we were due to leave, Pads began to dry retch! Amazingly, he 'came back up' and off we went.

Gradual improvement

Yesterday, in spite of being quite flat, Pads was really up for going out to the evening service but he felt ill on the way and we had to turn around. He wanted distracting so I suggested a walk around the park. This turned into hard work: sometimes P couldnt face being pushed because it looked too bumpy, so he got out and walked - whichever mode, it was slow and painful. We were worn out but relieved to get home.
It was the long-awaited Mabolgampau (School Sports) today. Here's Bo on the rostrom for coming second in the straight race.
That was our only medal this year, with Moli having moved up and Pads looking on. But they all enjoyed the experience.
Pads has been making steady improvements, not fast enough for him though, having to take regular pain relief. The entral feeds are as vital as ever - he managed to consume 2/3 MacDonalds 1/4lb'er with cheese, thanks to Nick and Wendy's generous 'voucher'... but that was about it.
Catherine brought Mike Howell's Edinburgh Marathon medal for us to see - looking forward to Pads being able to contemplate doing something like that - he cant even be pushed around the Race For Life as he's male.
Wot no tube!?

Bo's bit

Bo was doing his stuff at the assembly yesterday. You can watch him below. The video is on my flickr pages where you can also see some photos and video of recent hikes with Moli and Asher. I try to take them out individually like this overnight at least once a year (starting last year! just in time to 'do' Pads before his illness came on!)

'goofing around' again

I was a bit too tired to post anything last night but didnt want any more time to pass before saying that we had a good day yesterday. The party at Pentwyn went really well and Pads had as good a time as any of them - his earache had subsided considerably. Later, Ash, inspired by a badge he's doing for cubs, made the evening meal (two nights in a row). Today is Bo's birthday proper.

bikes

Pads is still notably flatter with his tube in but there's still no doubt that his body really needs the nutrition. He and we have had a good day. The main event was a bike trip. Pads is lined up for cycle training this week and so it was important to get a bit of practice on his new (old) bike. A favourite destination is near the Taff where a lot of ramps and such have been built. We're not quite up to Danny's standards but, who knows.... Pads didnt try any of them really but just to get there and back was remarkable. Part of the incentive was that this is very near a McDonalds...

Rocking Horse is a hit!

One of my old heirlooms has been knocking around the house for ages, a rocking horse - the hard plastic head had broken up and the whole thing was falling apart. Someone had the idea of sprucing it up to give to Reuben and it was delivered tonight. A real team effort, Ally bought the supplies and facilitated the boys painting the wood and metalwork, Moli did some fancy Easter artwork on the seat, I fitted the 2nd hand plush head.
Pads couldnt make the trip as he was concentrating on keeping his tea down (a whole enchilada). He's still very fragile at the prospect of the interventions tomorrow - there has got to be some way of getting him over his hang-ups (with the NG tube especially).

wobbly

So here are Llewellyn and his ill-fated dog, Gelert... they didn't 'win' but that didn't matter at all - they just had great fun and learned at the same time (I did too - notice that the lions on the shield are on their feet, not reared up...)
Later on they went to the Eisteddfod and witnessed a wonderful Llyfari (poetry recitation) competition where Ash did a great job, although didnt get through to the next round, but not as good as one of his best friends who won! This is pretty rare for their school. Other schools in the locality seem to put on a lot more pressure for results and they're a lot bigger so the 'talent pool' is bigger. On both counts we're very glad with what we've got.
Pads is on the sofa - he's pretty wobbly on his feet and woke up this morning needing pain relief for his throat. Another week passes with no school, but he's finished Inkspell and has started 'We didnt mean to go to sea' Still, we are on to a winner with the constant feeding and, so long as we can keep it up for another few weeks, we'll be in a far better place.
Wonderful message last night at the preaching rally with Pastor Malcolm Watts on the healing of blind Bartimeaus, 'I don't care whether you're a chapel goer or not. If you have never asked the Lord to save you, then you are lost.' Have you asked him to save you? If not, you must.

busy day

Pads was lined up for his chemo and the consultant was happy enough for him to have it. However, after that P was detained which meant all kinds of fun with me needing to deliver a lecture in the afternoon and Ally trying to be back in work in the afternoon. Thankfully Ruth, Rhys and Neil came to the rescue, sitting with P while kids were collected and cawl prepared, served and eaten. Pads is staying the night so that they can keep an eye on a suspect infection. Everyone is mystified by his throat problem but at least it is contained by the pain killers. Pads remains unable to talk and doesnt want to eat or drink.
As for the cometitions, Asher top-scored with his poetry recitation - he's through to the next round where he'll be up against local schools. Boaz made too many mistakes in his singing and recitation but has resolved to learn from it and try again next year. Moli's welsh-cakes were awarded 2nd place out of about 12 entries.

quiet day

Pads requested a quiet day today and got his wish. It had been a late night watching Wales miss out to France, who have a tradition of Friday evening rugby. He's a bit better, smiling and saying more... charging through 'inkspell' at the moment. The others had a good day too - Moli was very industrious with homework all afternoon, Ash went haring up a climbing wall at a party, Bo worked on drawing pictures of bugs on a chum's birthday card. We're looking forward to hearing how he gets on singing at the St David's Day school eisteddfod (Welsh festival competition) on Monday and getting the boys' costumes ready for World Book Day - they're going to be Gelert and Llywelyn.

back from Cromer

We arrive back from holidays in Cromer in better shape than we left. I kept my promise to rest my fingers. Pads gained strength and optimism, has truly accepted the feed tube - the benefits are very obvious. Bo learned to serve at badminton. Ash had to recover from 3 days with a high temperature before he and I made a new personal-best (47) at keepie-up with the beach ball in the pool. Moli enjoyed the food, female company, the telly and the pool. Pads was really quite active - he wandered around the Henry Blogg Museum, the Muckleburgh tank museum, played badminton, did jigsaws and was generally bright all week. They all enjoyed a turn at steering a boat along the Norfolk broads - not everyone enjoyed Bo's grasp of navigation!
One bit of telly that we stumbled upon in the week was the fascinating documentary about the Amish. Ephraim and Jesse Stoltzfus and their wives were 'saved' and their lives shone with love for Christ. Not only that, but when Ephraim's young daughter is diagnosed with leukemia, their reaction is typical of those who know that 'all things work together for good to those who love God' (Romans 8:28). The Telegraph review hardly does it justice. We were amazed at how this film got past the normal anti-Christian editing - rare it is to find an American Christian being portrayed positively on broadcast TV. It is still available on iPlayer but the clock's ticking...
Here's a photo or two of us on one of our walks along the coast (you can click on it to enlarge - I liked the way that the cloud and shoreline diverge):

School's in

Poor Ash couldnt bear it any more... he cried as he arrived at school. Everyone we know is missing school, including his sister and elder brother (who's off to the 'hot-tub'). Probably the snow wont last... so it's just as well Ally took them sledging the other night. Poor quality, from the phone, but you get some idea...
Speaking of hot-tubs... Rhys' friend came over the other week and pointed out that if he, Pads and Rhys went in the hot-tub together they'd look like three boiling eggs.

Kidney function and hearing test

His hearing is fine but there was more palava today with the needle - he did yelp and scream a bit. The Dr was wonderful with him though. We discovered that the urea was high again so they do need to do another blood test before his chemo on Tuesday next. Reviewing the process, it was observed that his arm was so thin they didnt really need a tourniquet. His weight has dropped again - he now barely registers at 29.5 Kg. Ally was so amazed at the news that she wanted a second opinion and took P up to another ward to check! However, he's packed in a decent amount of calories today - partly thanks to a steak donation!
Just scanning his school work from last week - seems he got very good marks (that was maths). Also arriving home was another lovely card from Year 6 with most if not all his peers writing to say they were missing him. It might be another 5 weeks before he's well enough to see them in school.
Pads is happy though, the postman finally delivered his replacement Blue Peter Badge Card, vital for gaining free entry to many of the UK's interesting sights. He'd got too excited with the original, sticking the film down without putting his photo underneath. I plundered the photo from his Tai Kwon Do licence (which he wont be needing until the brain surgeon gives him the go ahead - might be never on that one...).
This made us laugh: he was set the task of writing an acrostic poem based on the word Christmas:

Christmas has come, and T
He bells are ringing
Roast turkey comes, we'll soon all be s
Inging.
St Nick is coming for his annual cookie ea
Ting spree.
Morning comes with presents under the tree.
And soon there is a ripping noi
Se, of paper, HOORAY!

Moli was off school today and so had plenty of opportunity to romp in the snow but the smalls had to go in and so Ally took them up the Wenallt for a spin on the snow-disks. This nicely gratified all the excitement of the last two days, watching the white stuff arrive without being able to spend much time in it. Even the thought of walking to school yesterday was transformed in the hope that it might snow on the way.

brighter

Having sounded a bit gloomy about Pads earlier, today he was actually pretty bright. He went to the new church building, did some maths, is marching through his Morpurgo books. He ate as well as ever he did in December - devoured a decent plate of enchiladas. There was some realism to talk of school tomorrow. Moli and Asher went to a LATCH support group for siblings of children with cancer. They came back saying it was better than they thought it was going to be but they're going to have to choose between that and choir (Moli) and hockey (Ash).

1st infusion (continued)

Pads is reacting fairly normally to the infusion of cisplatin. It's hanging up covered by a red bag to protect it from being degraded by light. Next to it is the fluids drip, going in at a rate of knots to ensure his kidneys are getting a good flushing. He's tired and started feeling ill in the early afternoon although that has been eased a little with the anti-sickness drug. He should be out tomorrow morning.
Rhys took his chemo yesterday too and that went fine, except he's feeling tired today too. Not too tired to miss Jonathan Munday's induction as pastor of Exeter Independent Evangelical Church. I drove some of us from Tabernacle down in the minibus and by the 3pm start there was standing room only. It was an excellent service with our Pastor, a close friend of Mr Munday's, taking the sermon on 'seek ye first the kingdom of heaven' where he challenged us all to ensure our priorities were 'God first, else second'.
Others travelling today included the McFarlanes returning to Scotland (with Moli who had another week's school holiday to 'kill'). So just me and the wee boys at home tonight - quiet...

On his way

Pads and Ally were in good form as they walked off to the hospital for Pad's new chemo session earlier today.

Ally has just text'd me to say that the infusion is going well (started at 3pm) and thanks to everyone for their encouraging texts.
Here's a video of us at the New Year concert last night attempting to do the classic 'Four Yorkshiremen' skit...

Christmas tree

Ally mentioned 'it might be nice if, instead of sending a lot of cards to each other, the children paid a small contribution to a charity to put up a card on a card tree' to the Head and, to her great credit, the idea was actioned straight away. Ours have all made 'baubles', including Moli who doesnt even go there now of course, and £2 each will go to LATCH. Today is the Gwasanaeth Nadolig (Christmas service) which is celebrating Christmas 'around the world'. Ash representing Awstralia, Pads Yr Almaen (Germany) and Bo, the Bethlehem shepherds (bugeiliaid). Pads has to read a verse of Isaiah 9 in Welsh with his mate Harri.
Lastly for now, if you're in the area and fancy a festive evening why not attend the Christmas Celebration 2008 in aid of CLIC Sargent?

TJF foundation flat in Fishguard

Sorry for no blogs but we popped off for a couple of days at The Joshua Foundation (TJF) flat in Fishguard. We had a fab, if short, time; but we hope to return next year.

TJF also kindly gave us a family ticket for Pembroke Castle. You can see more photos of the time at:
http://picasaweb.google.co.uk/MichaelRhysJohnson/20081105Fishguard#

Great concert!

Moli was singing in the C&V High Schools Choir last night at St David's Hall. At the end Pads was particularly impressed that the collection was being taken for CLIC Sargent (because one of the orchestra members has cancer) Bo and Pads (back at school yesterday - but complaining of odd things like 'my legs feel like they've got sunburn') really enjoyed it although Asher thought he was better off at the ice hockey... We know better. Bo was blown away by the orchestra and will be haunted by the choir's final piece for ages (will try and get you a clip of it sometime soon).
Ally went with Rhys to Velindre yesterday for more results. The news was good - its the more common form of non-Hodgkins lymphoma. Treatment starts Friday with 20 tablets of steroids. The big chemo drugs will come on the following Friday. Rhys is enjoying Ruth providing him with all the food he used to have to sneak (although I hear he's fed up of chocolate!).