Joiners

Pads has been quite well since I last wrote. He just had one headache last week and he's managed to walk up the steep hill to church a couple of times. We've hardly had to use the disabled parking badge: I'd rather not use it if it leaves a space for drivers who are disabled. Tomorrow is their last day of the Easter break. There's just a short run then into the summer for the older two.
Pads has enjoyed learning a bit of joinery with Uncle Rhys, who is also doing quite well. But he really would like to get rid of the PEG... could be any day...

Another first

So Pads elected to go in on Wednesday afternoon to make up his extra half day in school this week, thus we're up to 3.5 days. By tonight he's very tired but still in good spirits. Earlier, Ally was recalling how it was about a year ago when we were reaching maximum stress about the NG tube. We've come a long way back since then. When he arose this morning he seemed weary and weighed down... but he worked through it, got ready and out. By the time he was in the car he was jolly and chatting with one of the others who share a lift, laughing at how they've succeeded in teaching three toddlers of the church to say, 'Bevis!' (the name of our good, stouthearted friend from France). On Tuesday, Pads was awarded first place in the eisteddfod for his calligraphy. You might recognise some of the ink-art from last year was used for the border and first letter. The text is psalm 117 in welsh. Apparently, quite a cheer went up when his name was announced.
In other news, Rhys has done a fantastic job of putting up the whiteboards in the church office. They are big and warped so he made a frame to hold them in place. It shows that he's also making progress.

time-out in the tub

It's been another quiet day - pleased to see time moving on for P without major incidents although we're braced for them. A recent side-effect is that his eyelids have been twitching although this is not too distressing. This afternoon he went for a change of scenery to Aunty Ruth's. He's very chirpy and sweet, especially thankful today for everyone's kindness and support. Poor Rhys (and thus Ruth) is still having post-chemo 'bad days' - they've been warned it'll take a long time to recover and this is almost as wearing as the treatment.

a couple of hours of school in the afternoon

Pads was very tired again this morning, and distressed at the thought that this may be his last day in school for a while. But we reassured him that it was just one day out of many that he'd missed. By 12 he was ready for action again, ate some scrambled egg and requested a stir-fry for dinner. The worst aspect of going to school in the afternoon was the weight of his bag.
We're so happy for Rhys that his scan was clear (if you didnt catch yesterday's blog post comment) and look forward to joining him and Ruth in 'post treatment' world on the up-side.

good night until about 4am

They'd just been congratulating themselves on a 'good night' when things started to 'happen' - nothing life-threatening, but it was a bit of a shock, and then Al had a coughing fit for an hour.
Last night we were having a chat about 'after' chemo and to what extent P would recover and how quickly. Rhys is predicted to need a year before he feels well. It's tempting to see just two outcomes - return to normal or enduring defecits that are life diminishing. The reality will be neither, or at least a mixture of the two. Looking back it is also tempting to see a year plus laid waste. In fact, in many ways, even because of the harshness of it, it has been a jubilee year. Few will suffer like Job, whose wife said, 'curse God and die' (charming!). Yet the Lord has made us more than conquerers over sin, death and hell, and though... 'My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.' (Psalm 73)
Today Boaz is incredibly motivated to be in school with Mrs B, doing craft and design, plus hockey after school. He even ate his oats when I said I doubted he was well enough.

not off to school again

Pads came home exhausted - said he'd been tired all day. It's still quite early in the cycle to be expecting great things - but there's a fine line between being good enough and not. This morning he's puffed out too.
Bo has a temp again this morning so we're hoping that won't deepen or spread. He responded well to calpol and brufen yesterday so that we could make a bit of a day of his INSET (saw UP - 'recommended' and met Ruth at the car park after their good scan result), while Ash was in Longleat with a friend. In the evening, Moli went to Air Cadets for the first time - a different world!

6th Cycle day

The kids have had a full few days. Thursday the small boys went to Bristol Zoo with Antie Bethan (expending their limited edition 'day out with Auntie Bethan' birthday vouchers). Pads tried to sneak along too but it hadnt been his birthday and he ended up going, with Moli, to see a farm where Auntie Ruth's owls are currently living. Then, in the evening, Pads got to go with Auntie Bethan after all - to the Dr Who exhibition and then to Old Orleans. Demonstrating what a fine line there is between feeling OK and not, was it the slightly over-filled mouth of enchilada or feeling slightly too hot in his hoodie, he had to rush to the 'rest-room'.
Thank you Auntie Bethan!
Meanwhile the rest of us enjoyed a trip to murky Barry Island: here's a picture of Rhys enjoying his last day with the wheelchair they hired.
Today is glorious in Cardiff - perfect for being 'tied' to a hospital bed waiting for drugs to infuse.

An enjoyable hour at Pembray

Yesterday Pads managed to make it to Pembray where his Year were having a trip.

Nice place. He even went down the tabogan run but his fizz only lasted for an hour so it was as well that Ally had gone with him. Still, it was very worthwhile. He's been quite flat today again. The nurse who looks after PEG tube people visited. With the entry site healing satisfactorily, it doesnt need to be quite so tightly clamped to his tummy. Pads assisted in moving it in and out a bit. He says it hurts now but even that is preferable to the days of NG tubes.
Ruth has sent me a photo of Rhys to show you from their trip to the Hampton Court Flower Show. With the cart he was able to do his own thing and didnt find it too tiring. He's not predicted to be ill for long enough to justify having a 'blue badge', like Pads has. This means he doesnt automatically get access to disabled parking and facilities, even though he has certainly needed it for the last weeks and will continue to need it for another month or more.

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.

progress

It went well – significant progress was made in lots of ways. Pads is adamant he doesn’t want a PEG so is persevering with the NG tubes. To do this he’s making a list of his requirements. LOTR music, sedation, Jane doing it, not too fast, mum and dad holding his hands, a burger, lying on his own bed. Most of these were met. We argued that having the burger after the tube would be a bad idea as it involved travelling while under the influence. I had mentioned to him that he may be able to think rationally now, but that, when frightened, he ‘loses it’ and starts to panic. This happens to the best of us, but I meant that, with the things we’d agreed, we’d still carry on fitting the tube even if he started to say no. I felt this was an important bridge to build since the time he asked us, ’why didn’t you believe me when I said I didn’t want it?’ the other week. We sent the others off to get chips so they didn’t have to hear any howling. In the event he was very calm – at the peak of the sedation effect, but still, with his music on, and with his agreement, we approached. He didn’t say ‘no’ at any time although he did struggle a bit at first – agreed to let mum hold his hand and then me too, in case he felt like struggling too much. It was clearly unpleasant, with some gagging. Jane tested that it had gone down far enough but it hadn’t and the syringe came apart in the process (to check it’s gone down far enough they try and suck some fluid up from the gut and test for Ph). So it wasn’t all that straightforward but he was willing to push it down the last few centimetres himself – which was major progress. We all felt that we could go through that again. Having had one McBurger today, we asked if he’d be willing to join us for pizza and chips: at 6pm, with the night wearing on, we were glad he agreed.

Rhys is finishing his course of treatment today with a spinal injection – I think the hangover will last a while yet though. For Pads, Al worked out the other day that the last week of his 8th cycle is the first week in December. Not trying to show off or anything because Rhys is my new best pal having donated 2 big sacks of wood for my chiminea :-)

Steady improvement

Yesterday nothing much happened except that the two little boys didnt go to school either. Ash was clearly under par and we're not sure about Bo - but they're both fine today. So Pads had a bit of company. He was pretty flat and today not much different, at least initially. There were a couple of worrying moments where he said he felt sick, but these passed on without event - thankfully!
Then, at about noon, the thought of a burger was enough to get him dressed. After two days of dragging the feed pump around he wanted a break from it. He didnt quite manage all his 1/4 pounder though.
On returning from McDonald's, he was up for taking the dog for a walk. Sadly this was biting off a bit much and he was forced to return looking a bit shaken. He'd run out of energy around the corner, but didnt have anywhere to sit down, didnt even have the energy to put the dog's lead on. Thankfully Moses is pretty well behaved.
Meanwhile, the other chemo kid, Rhys, has been to get his mask made in preparation for radiotherapy. This will begin after his chemo ends soon.

Rhys in full battle dress

Very shaky image here of Rhys on Ruth's arm following his lumbar puncture (for chemo) this afternoon when Al happened to be in work. Caption competition anyone? Actually, Ruth's already won with what she actually said at the time: "the last time we were doing this [linking arms] we were walking down the aisle after saying our vows.!"

Rhys misses

Rhys is just back from the clinic for his next dose but, having had bloods taken, they were just too low to go ahead with this treatment. It will be delayed a week to see if he can climb back up.

Rhys update

Rhys popped in here after his clinic. His bloods are down so he's going home for faggots and peas, Christmas pud-pud and etc. He's got to go back for blood tests again tomorrow to see if he can have chemo too.

+1Kg

Pads was with Sarah today and her wii showed him as having put on a kilo in 7 days, progress. He's fine in himself.
Ally was in work today as Rhys went in for his 5th cycle of chemo - a lumbar puncture, squeezed Al's hand pretty tight by the sounds of it.

Rhys's result

Rhys had a scan and it was clear - which is great news! He had a scan yesterday morning and the consultant phoned at 2pm very kindly to say there's nothing left that she can see. He's going to see her on Monday so she could easilly have waited until then. He'll continue to have the treatment until June (including the lumbar punctures - ew!), but this is a very welcome result.
Pads has started to talk again... this happened on the way back from the library - he just thought he'd give it a try, and Mum let out an open air 'woop-ie!' Still finding swallowing hard... but since it's the first thing he's eaten for over a week... can be forgiven.

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...

belly ache

Pads is still having belly ache that's keeping him out of school and down in the dumps. He's sniping at his family to the point that almost nothing he says is positive regarding them. We're just trying to get to December when he'll be treatment free and, hopefully, he'll recover a bit. We're delighted that this has enabled us to plan a few things, including a visit to the Joshua Foundation flat, and we've booked the Pooles (Ally's side of the family) for Christmas day.
Sadly, the news concerning my brother-in-law Rhys isnt very encouraging. We heard today that the lump under his chin has been diagnosed as a lymphoma. There's an all-Wales panel meeting to discuss the exact diagnosis so from that they'll be able to plan his treatment. At least most of the wait is over for them. It's terrible being in suspense.