Lemon

Thankfully Padi didnt need any breakthrough relief yesterday although he had had one dose today. Right now he's enjoying a film (The Help) with Moli. Since Moli finished her GCSE exams she's had a little more time on her hands. One pleasant commitment was to make each member of the family a dish of our choice in turn.
Last night was Padi's turn with donuts.

He did manage one, after his scrambled egg on toast. As delicious as they were, in Padi's book, nothing quite beats McDonalds! But we're gently coaxing his palate - there's a bit of a lemon theme. His eyes light up at the mention of lemon drizzle cake and, this morning, he breakfasted on crumpet with home-made lemon curd.
Mol featured Pads and his likes in a piece for her recent Art GCSE:
The hospital forms the skyline and that's Padi's silhouette on the left.

Padi is greatly comforted by everyone's prayers. He's come to terms with the fact that he can't go out any more and is just a delight to visit. I think he must have been enduring a fair bit of pain recently because he's been quite a bit brighter since the diamorphine dose went up. The medics were reluctant to raise the dose if he was simply spiking a couple of times every few days but he was waking up in severe pain - barely able to move his head and requiring more fast-acting analgesia.

Moli's last day at WICS

It was Moli's farewell assembly and 'final day' at WICS today. She has some exams after half term but today is formally her last.

Moli in 2008:

There was a lot of emotion, most of it fully justifiable. The 'leavers' assembly is a major event in the school's calendar, not least because of the close-knit culture. Leavers get to choose the hymns: Moli chose Pad's favourite, 'Oh the deep, deep, love of Jesus'. The staff take a couple of pupils each to make a short speech to and about, in front of the school. They seek to inspire the students with spiritual ambitions, not just the academic type. The interaction between Moli and Mrs Harris was very emotional. Mrs Harris said that there are two things Moli is passionate about, her family and 'this' (holding up the Bible she was awarding - this was a Spanish /English edition). Mrs Harris read at length from Ephesians 1. Having been adopted into the family of Christ, she challenged Moli to reach the lonely and broken people she would meet serving Him in her life and hopeful profession of medicine. It was a real challenge from an elder sister in Christ. On a lighter note Mrs Harris was liberal with her teasing about how messy Moli is in art, 'messy toad',she said, in broad Northern accent.


Meanwhile, as predicted, on Wednesday Pads' diamorphine dose rose to 240mg, the breakthrough is now 120mg. He remains comfortable and enjoying visits, especially from those who will talk of the Lord and pray with him.

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.

Last trips of the summer

This week saw the return to school for the 'smalls' and thus the tutor for Pads. He's thinking about studying some history and we have the amazing 'World at War' TV series on VHS that my mother subscribed to years ago so that's a terrific resource.
I took Moli off for an overnight camping trip to the Gower from Friday to Saturday evening. Although the bus only cost £13 return from Cardiff to Rhosilli for the two of us, I had to get a taxi on arriving at Swansea to avoid too much walking in the dark, the connecting bus having left 15 minutes earlier. The stars were sprayed across the sky by the time we'd walked from Parkmill to Oxwich Camping Park, only to meet a sign saying they were closed for the year! I walked up to the door, not wanting to find anywhere else at that time of night. There were signs of life and I knew the people were friendly from a previous stay. Not only did they let us pitch up but the caretaker insisted on giving us cups of tea that evening and the following morning! We had a very flat pitch :) Moli got some good ideas for her Art GCSE that trip (more photos here).

Meanwhile, Ally took the boys to the Usk show. There were all sorts of things that kept them entertained and so they stayed a lot longer than expected. One of Pads favorite things was a display of matchstick models (like the one below, although this is not from the display at the show).

Pads at Paignton

We had an option on a holiday in Paignton, through a network of hotels that offer breaks to families in our position. In the event they couldnt offer us anything in the school holidays, the kids having missed a couple of weeks already. But Pads was up for the trip and so I was keen for him and mum to take advantage. It was a fair way to travel but they made it in good time yesterday. Pads likes his bed these days and cant be left for long, especially not in unfamiliar surroundings. So it was terrific that Pastor David and Ruth Kay were able to travel down from Barnstaple to visit them this morning. I think I heard that Pads was beating Pastor David at chess on the i-pad!

 The hotel at dawn this morning

 Pads at Paignton

This is a week of travelling, with Moli away to Scotland for work experience with Christian Focus Publications. We're very grateful to Catherine McKenzie for taking Moli on and to Ross and Amy for putting her up. I was helping with the PA at the Birmingham Conference last Friday and Saturday and then I'm off to the Netherlands for a conference next week. Asher is eagerly anticipating a trip to Newtown after the holidays. He's been practicing with Whitchurch Hockey for years but misses out on games because they insist on playing on the Lord's Day. Last week we heard the school were in a tournament in Swansea. Ally phoned and the next day Ash was scoring goals for them - including two in the final - which they won!

Handel's Messiah with Humbug

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)

Up with the lark

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.

Excitement mounting ahead of race

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.

Moli to race Holly

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.

Asher's scalping

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.

Some welcome slack time

After a calm Christmas (apart from acquiring another dog and going sledging), it was time to get on the road to visit Ally's side of the family. We've done this via two nights in a hotel - seems Pads is a bit allergic to the bed - has come out with a sore/itchy rash on his neck this morning! Hopefully nothing that a dose of piriton and some topical cream wont sort.
Pads coped well with the journey here and a 10 minute walk to catch a bus to visit the Imperial War Museum yesterday. He still gets quite a lot of pain in his feet (neuropathy from chemo) if he's on them for too long so he did well. The 'Ministry of Food' exhibition was excellent, although I was slightly miffed that a 'family ticket' only included two of our children.
Ally took a slightly panicked call yesterday saying that Pads MRI scan is on Friday, contradicting a previous notification. Another call this morning confirmed that the date is indeed the 31st January. Phew!
The picture is all I could catch of Moli on ski/pallate-sledge that we'd been trying out. Sadly, what you cant see is that Asher was also on board performing all kinds of artistic poses! Sometimes you just have to be there...

Improving situation

Pads' move to isolation is purely precautionary: if someone gets a tummy bug, it can spread like wildfire on the ward. But what Pads has is almost certainly antibiotic-related. Although they didnt settle until midnight, since there was just one disturbance at 5:30am, that counts as a good night, and certainly better than expected. The mic-key site is looking 'amazing' (i.e. his infection is clearing).
Meanwhile, Moli has left for two weeks working at the massive Fairford air tatoo with the Air Cadets. We only found out Thursday morning that there was a space available. The Commanding Officer and his quatermaster went out of their way to meet us at the barracks and get her fully kitted out, including shiny boots that had already been broken in.

School sports and reports

Pads is doing well. He'd not needed anti-sickness medicine this morning (although he clearly needed some by noon!). The administration of G-CSF, by the CLIC-Sargent funded visiting nurse, was almost a non-event. Although he's not eating very much, the overnight feed is supplementing his diet nicely. This morning he was able to attend all of mabolgampau (school sports). The smalls did us proud: Ash got a gold for the shot-put and greatly contributed to a silver for his relay team. Bo won the straight race heat and final, and put that speed to good use with his team's relay gold. There's no doubt that their relay efforts were a major factor in lifting their team's place from third to second overall.
In the afternoon the Christian Lewis Trust funded play therapist visited Pads. We'd called her in after such a hard time of it on Monday. We never know what they talk about, it keeps a welcome open channel for him to say whatever he wants to. We didnt risk him going out to Moli's choir concert tonight as it was like furnace in the church they use last year.
The 'bigs' school reports came home today. It was clear from every item that Pads is dearly missed. For example, 'a very polite young man who loves to talk reflectively and thoughtfully.... always respectful and always kind... a joy to be around and interesting to talk and listen to. We miss seeing him around school for these things and await his return in the next year...'
In other news, the LATCH social worker phoned to tell us that they give a small grant to children going into isolation, to spend on something to keep them amused. I suspect games for the PSP-go will be high on the shopping list.

Wobbly voice

Spoke briefly to Pads this morning on the phone and he sounded a bit wobbly. On speakerphone, the smalls were able to say hi too. The anaethetists were arriving. Just had long enough to assure him that we and you are thinking and praying for him and that the Lord thoughts towards him were 'of peace, and not of evil, to give you an expected end'. (Jeremiah 29:11)
Moli is ok - she should be out this morning.

You couldnt make it up

How is he? His usual bubbly self for most of the day. He knows the ropes. The day was passing slowly for them until mid afternoon when the nutrition nurse (looks after people with PEGs), the specialist chemo nurse, the surgeon, and several others descended on his room at once. They put the surgeon off because I was trying to get back to be included in the meeting. The reason I was not there was that Moli had fallen off a chair in school, sustaining a cut that needed stitches. This was not going to happen without a general anaesthetic. Considering how close we live to the hospital Pads is in, when the ambulance took Moli to the Royal Gwent it added another twist of complexity to the weeks events. I had never expected to complete two consent forms in one day! There's a space on the form for you to opt out of certain aspects of the treatment. I wondered which of the stitches or anaesthetic Moli would choose to not have...
Once again, family and friends have been a wonderful support. Sarah and Hannah were there for Moli's needle and Sarah it was who took over from me this afternoon so that I could return to Cardiff in time to give consent for Pads. Moli emerged from theatre at about 8pm - the irony of visiting his sister in hospital tonight was in no way lost on her brother. She should be out tomorrow. Pads surgery is expected to take until noon, if not later and he'll probably be in for a week.

less puffy

I'm glad to report that P is less puffy today, so he's off the piriton. The rest of us had the swine-flu jab yesterday: some fared better than others. By today, M is still too ill anyway to go to school but Ash has a slight temperature so he's off today as well - gutted to be missing rugby training tonight. Bo is funny - he's the sole surviver, with plenty of winter gear but wearing none of it - what is it about having to wear one's jumper around the waist!?

Swine flu jab

Pads was brilliant for his swine flu jab, but as he wandered out of the surgery he started to complain of being too hot, even though he didnt have his jumper on and it's about 6 degrees C: ' I dont feel good' (code for about to be ill). Al pushed him outside, he was ill there and went bright red. It may have just been a normal being sick but he said, his face 'went really tight'. And indeed his face was blown up - eyes like slits, blotchy, and he was collapsing. This didnt phase the Dr or nurse but I had a call to help and when I arrived he certainly looked puffy. But he was talking and his BP and temp was fine. Two hours later after piriton he still looked odd. Later the consultant phoned to talk about his hair loss but she said he must have had a reaction to the jab.
The scan appointment came though for 15th December.
Meanwhile, Moli was in out of hours surgery at 8pm. At 5 she came over all hot, cold, achey. Suspected infection. Ironically they saw the rather abrupt Dr who diagnosed Pads with torticollis (that was 5 Drs away from spotting his intercranial pressure in August 2008): 'we've met before' says Al gently. 'I came with my son and he had torticollis, but it turned out to be a brain tumour.' More than a little horrified the Dr repined, 'It was an unusual presentation. I am so sorry'. One by one we'll see them all at this rate!

Almost a 'normal' Sunday (i.e. momentous)

Right at the nether end of a chemo cycle, we had our first normal Sunday for ages. He even made it to Sunday School in the afternoon. Everyone at church enjoyed seeing him so happy. At one point, talking to Daniel (pictured below - the one in the penguin outfit) he became quite helpless with laughter over something that'd tickled him.

Last night we were at a concert given in aid of the Llandaff Cathedral Organ Fund. Daniel was playing so Moli and Pads were keen to come along and enjoyed it immensely. Pads decided to bail out at the intermission which saved him from a late night.

still tired

The invalides went out for a brief walk in the park today but neither of them were up to much. Moli was still a little wobbly and Pads was quite breathless... we're wondering what his blood counts are like. All should be revealed tomorrow when he goes for the kidney function test (or GFR) and audiology because they'll take bloods then too. I've been to Hawkin to get some things he can fiddle with one-handed while they put the needle into his other hand. He's also got a plentiful supply of rubber bands to make his rubber-band ball while he waits. The clinical psychologist came to these suggestions in a one-to-one with P the other week. Moli's intending to go to school...

7 hour shocker!

Ally woke up this morning to realise that she'd slept for 7 hours straight! That must be the first time in ages - especially surprising in hospital. She noticed that the drip had been taken down in the night too so the nurses must have been really quiet. Pads' continues with his run of stability - no sickness or temperature spikes. They're giving him more fluid into his PEG tube to see if he can manage without the drip. The other boys have gone to school today, but Moli is still 'splat'.