The deed has been done

Still time to sponsor Asher ;-)
http://www.justgiving.com/Ashertorrigwalt2011

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.

Photos from the Florida Trip

I cannot stop to detail all the places we went in the second week of our trip, although it was slower-paced than the first week. Just to say that it was wonderful and we got back safe and sound, thanks to Neil for driving our van to Gatwick to collect us so we could slump rather than risk an accident. Even though Florida is only 4 hours behind the UK, none of us slept very well on the flight so we're all feeling a bit fuzzy at the moment... except for Asher of course, who pretty much stepped out of the car only long enough to get his kit and then was back out so that he could help his school rugby team at a local Urdd tournament. They did really well, only losing one of their four matches and only failed to get through to the next round on try difference. Many schools have two classes per form but the boy's school has almost only ever had one (with the exception of Moli's year) which means they have twice the numbers to select from.

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...

Ash and Ben: Cossack dancing!

Asher and Ben were amongst the stars of the show at the School Christmas concert! It was about Babushka.
Pads was able to come over from Glantaf (where yet another person had removed his hat...! but he's taking it all in his stride) and used his new camera to good effect. Jacob's Starz had targetted him for a gift. Jacob died in Sept 2009 of a brain tumour and his mum set up a fund to benefit those who'd been having a tough time. A lot of children are wanting i-pads etc. but P was trying hard to spend as little as possible... he chose a digital camera that cost 1/5th of the donation.
On Monday Pads went to two lessons back-to-back, but that's it for the week now. He can't escape the home-visiting tutor so easilly though! She's coming again tomorrow.

More on Glantaf

This has been an eventful week for Pads. He had been fairly coy about going back to Glantaf but by Tuesday he'd lined up Art, one of his favourite subjects. The teacher was, apparently, unfriendly and sarcastic towards him, which left us picking up the pieces, appalled that anyone could be so insensitive. In conversation with other parents, it seems like this teacher is notorious for crushing pupils. In fairness, the staff we link with were annoyed and determined to act. It turns out that this teacher had actually been impressed with, and complementing Pads, for at least trying to answer questions. 'Impressed'?!? Hah! Once P had started to reflect on the lesson, he was vowing to go back to the same teacher, to show he will not be intimidated! How's that for impressive!?!
Wednesday, he went back. This time it was IT. At that lesson a teacher pulled his hat off, as did a year 9 child. In fact, there were three teachers in two days telling him off about his hat! Thankfully he's taking all this in his stride and the year tutor is doing all in her power to put things right, as is another senior teacher, and Pads' cousins! It just shows the difference between a small school and a massive one in terms of the spread of characters and the difficulties of communicating to them.
Thursday he went to Ruth's to do some woodwork with Rhys.
Last night Neil and Sarah took the boys and Pads' best friend to the Panto, tickets courtesy of The Christian Lewis Trust - they all came back with a bag of goodies!
Today we had a boys trip to a local badminton court where Pads was very tickled to beat Asher in their singles game. Although he trailed over the park in the wheelchair, Pads did participate in some gentle sport for almost a whole hour!
Pads is now down to just 2ml of sodium per day, so his kidneys are getting back to normal.

On the launchpad

No pun intended. This morning was a fairly painless waiting game. At least it meant that Ally could attend her LATCH mums' pamper day. The CD-34 result took an age to come through. Meanwhile, he kipped, read, watched telly, wii'd and wee'd. Pads agreed to allow a 3rd year student nurse administer his GCSF. It took a while for her to insert the needle into the venuflon, but he hardly flinched as the fluid went in, a 'far cry' from last week. Remembering they started on the 28th June and were expected to go on for 7-10 days, he's actually had 15 of these!

In spite of the calm in our 'isolation' room, apparently, there were frantic negotiations between our ward, Cardiff theatres and Bristol. Cardiff theatres had a backlog of 15 cases and so our people were looking around for options: Pads was unnerved at the fairly urgent poking his arms were subjected to as the consultant looked for a good vein. Perhaps Bristol could be persuaded to do the harvest with lines into his arm (as per adults), instead of him needing the vas-cath. In the end, Bristol came up trumps, we just had to get him there by 5pm! It is amazing how quickly things move once a plan is hatched - quite bewildering, even disorientating. At 16:24, Pads txts me to say they're crossing the bridge. Never having been before, Ally was very grateful to get a parking space very near the required entrance.

Although Pads was 'nil by mouth' from 6am, he doesnt eat much so it's hardly a big deal. As the day wore on though, he would at least liked to have drunk something - they put up IV fluids instead to keep him hydrated. By the time it had been decided that Bristol were not going to put the vas-cath in tonight (urgent cardiac case put paid to that), he was ready for a burger. It's always a significant event in his recovery when he not only wants a burger, but actually still wants it when it arrives, and then eats more than half of it.

Back home, the smalls were in the choir for the Year 6 leavers' show - a Welsh version of Lion King. They'd been singing the catchy songs for weeks. It was a wonderful production with some outstanding performances. Everyone clearly enjoyed themselves - at least one parent was able to see them.

Zero

Unusually for him, Pads dipped in his sense of well-being just in time to see the consultant today. We were consenting for the stem-cell harvest. That should happen next week, but the whole thing is very contingent on what happens with his blood counts. They took some today and his neutrophils are at zero and 0.4 white cells. So that's his bone marrow emptied, now we're waiting for the GCSF to stimulate the production dramatically. That should start to happen over the next couple of days keeping this vulnerable spell short. We're increasing his tube-feeding, as his appetite is still weak and only likely to fall off more. The feed may help fend off the feelings of being starving but then actually not wanting to eat what's put in front of him. He was thinking of having a burger, but just 100mls of pediasure was enough to put him off that. A cup of orange juice was all that was required.

On Wednesday we decided to have Asher's birthday party early. They're an easy bunch to have over, always interested in each other. Games in the park, pizza, films (including Gatland's Guns), sleepover. Easy.

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.

Plaster off

After a quiet morning yesterday, Mum and Pads went to Cardiff Bay for an icecream - getting to be a bit of a theme... Cadwalader's struck them as being pretty good value.
I was pleased to attend a LATCH dad's 'chillout' event at a nearby golf-course. The weather was fantastic - far outshining my rubbish attempts at golf. Amongst 14 other 'cancer-dads', I felt slightly like the wrong person to talk to after the shock result and surgery of last week, but, of course, all the others have similarly difficult stories.
It was great to welcome Asher and Boaz back. They had been to Aberystwyth with Auntie Sarah since Tuesday, many thanks to her (again!). They'd amply made up for the cancelled caravan family holiday, doing all kinds of fun things (getting soaked on the sea front, visiting feeding time with hundreds of red kites, eisteddfod watching cousin Llŷr and his choir, etc. etc... so much that Asher's just spent the whole morning writing it up for homework!).
We took a call from the consultant to organise a meeting and that'll be on Monday at noon. She'd had a good conversation with Alderhay, so much so that it seems unlikely that we'll need to visit there. She's also trying to organise a lumbar puncture (further checking for mobile cancer cells) and a 'Mic-Key button' (replaces 'George') to be done under the same anasthetic.
Later on, Auntie Sarah (with her wound expert hat on this time) helped us move on with the strip of plaster. After carefully applying some Zoff (disolves the adhesive), Pads reclined in the bath and the plaster came off. I did take a picture to show Pads what was underneath but that's not really fit for general consumption (4 inch scar)!

Badminton!

Tonight Pads ate the closest thing I've seen to a normal plate of food (at least 'normal' for one that'd been served up for Bo and Ash). He survived school again today and wants to go and play badminton with me - so I'm just fitting typing this in before we pop off.
Earlier in the week, the PEG nurse advised us to apply hydrocortisone cream to the site and not to worry at all at his 'spare tyre' as he really needs it - growing boy.
Ash played well for his school on Tuesday against a team of lads at least a year older than him. Sadly his team took a pounding but they're back for more next week in a game of tag which they should do better at.

- Back from badminton. He did really well - hit plenty of them back to me and spent most of the time grinning a lot - a sight to warm your heart. After half and hour he decided to go without his woolly hat and thermal long-sleeve vest. He decided that stripping off to remove the long-johns would be a little bit too much for the rest of the folk in the leisure centre. It was quite enough for them to potentially get a glance of his PEG tube! He's keen to go again next 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!?

still down but a good night for the CLT

Pads and Ash spent the day with Auntie Ruth as both their parents were working today. A seems to be recovering but Pads is still pretty low about the hair loss, as one might expect. Ally was digging out all the old hats from last December. It seems that the old 't-shirt on the head' trick to help his bonce stay warm overnight was not fantastic so I've lent him my cotton balaclava instead.
Tonight Ally hosted a busy charity Pampered Chef party that raised over £200 for the Christian Lewis Trust who are celebrating 20 years of fundraising. Even if you couldnt come, if you would like to buy anything to contribute to this successful event you still could. The order book will be open for a short time - have a look at the catalogue online (I especially like the spatulas) and let us know if you want anything.

Moulting again

Neutrophils: 0.47 (improving)
HB: 11 (ok)
Platelets: 27 (poor)
Thus he's been in for a platelet transfusion today. Perhaps the donor was bald because tonight P's hair fell out again. Seriously though, he was very distressed about it. To finish treatment bald when you've been growing it happily for his entire chemo was as gutting as it was unexpected. Last Christmas he was bald from the radiotherapy. At least he'll look more the part when he goes to The Joshua Foundation sponsored events over the next couple of days.
Of course, it doesnt fall out all at once - the sides and patches of the top were still wanting to stay put for now so Ally got the clippers out and completed the job. Feeling rather light on top, he's gone to sleep using my old scout camp technique of wearing a cotton t-shirt on his head.
Asher has had a quiet day off school. If he has a good night he should be back in school for most of tomorrow.

Asher's turn

Today it was Asher's turn in the medical spotlight - he'd cut his head in a school swimming lesson. At 11 am I had a call to meet him at A&E, just a stone's throw away from where I was in my office. He duely arrived, looking rather cold on the trolley - he really does like to be cosy and all he had on was some damp bathers underneath some measly NHS 'blankets'. You can just imagine him though, using flippers and being told to go as fast as he could, tearing through the water until scraping/colliding with the steps. We need to get him some goggles that he's comfortable with!
Asher was very brave indeed for all the cleaning torture, then they glued the cut together.
Meanwhile, Pads, who'd had a fairly mundane day, is slightly miffed that, after all he's been through, Ash is still the only one in the family to have had a ride in an ambulance (although it should be noted that neither siren nor lights were employed). I suppose it sortof makes up for Pad's various rugby-related trips on Friday and Saturday.

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'.

He could be in until Tuesday

Pads could be stuck in for another few days. The fact is that he's not managing his own fluid balance because so much is exiting before he gets to absorb it. The blood results from this morning showed that he's ok on most scores except white blood cells. The lomustin (chemo) kicks in around now (at week four of the cycle), plus the flu knocks your white blood cells, so these are taking a hammering. But there are signs of improvement with his chest and his spirits are still bright - probably brighter than the kitchen at home tonight, which was decidedly lack-lustre... Moli and Ash are both low, Bo has been better but is still not quite right. He managed a dog walk with me this morning. We enjoyed testing branches to see if they were rotten by jumping on them. The springy ones were like trampolines and the rotton ones just broke, but were fine for a bit of 'log rolling'. Then one of our friends took him to play at their house for a couple of hours as he's pretty much through.
The parents are not too bad at all by now - still coughing and feeling occasionally droopy - nothing new there though...

Bo's emerged

The night was fairly peaceful at home but Ash and Mol are still under the cosh. Ally reports not getting much sleep at all, as much through not being able to as anything. Pads has a pain in his tummy that's related to the drugs and strong vomiting he's been doing, but thankfully he wasnt sick in the night and that means a bottle of the good stuff has gone in and stayed down. He's also got pain when he coughs, hopefully that won't prevent him clearing his lungs... Al's going to ask about physio for him today. In any case, they'll give him anti-biotics to ward off a chest infection. Bo was very reluctant to get dressed this morning - wanting to enjoy the pampering and relaxation that goes with a day on the sick. But his temp was the lowest of the kids at home this morning and, plonking on the piano as I type, he seems to be fairly well out of the flu now so that's a shaft of 'light at the end of the tunnel'.

would be really nice if he didnt get pneumonia

It was great that Al was able to come and see us for a bit. We talked about the day and how it compared with some of the real low points in Pads' suffering over the past year - like the time in France on holiday when he had to sleep in the front seat of the car because it was the only position he could relax into. This morning I noticed the arnica homeopathic pills in the bathroom cabinet that the French GP prescribed.
Before she came out of hospital, Ally saw the chest x-ray machine being wheeled into another room. It would be great if he could avoid that.
As she was leaving to return to Pads, Ash came down saying he was dizzy. We had just settled him into Pads' bed when Moli appeared with another nose bleed. Both of them usually sleep on top bunks - not the best place for dizzy folk, so they've been settled back down at lower levels.
Earlier, we read and prayed together - John 20, the resurrection. Whatever befalls us here, the future is to follow the Lord Jesus into and then out of the tomb!
Stop Press: txt message just in saying that Pads is much brighter on mum's return - appreciating the chance to listen to audio books on her MP3 player. Also, it looks like Moli and Ash are going to get some tamiflu from the hospital as they're still earlyish stages.

rough afternoon

Sadly Pads improvement came to an end when he started to feel much less well and eventually was strongly ill. A review of his medication ensued and it was decided to take him off tamiflu because its useful period is over and is probably doing more harm than good. His temp started to climb a bit, so he's having IV paracetamol and ameprazol, as opposed to via the PEG tube, in order to help his tummy recover. It's a bit of a setback for his fluid balance too as he brought up quite a bit of the liquid feed. He's feeling rough. Mum's also feeling rough - she didnt make it over to see us today so that's a bit sad.
Meanwhile, at the other isolation ward, home, B & A listened to audio books all day. Moli whiled away the illness watching DVD's. Now they're hooting with laughter at Home Alone! (kinda ironic...)
We're indebted to friends and family for support at this time especially. Auntie Sarah brought us 'The best sponge in the world', which she'd made earlier, and walked the dog; Auntie Helen brought us a complete evening meal (the lasagne had to go in the freezer because none of us have appetites!). Auntie Ruth brought us a lake of coke and I would never have believed how easy it is to get kids to drink that instead of water.
This morning I came across another revival promise and have added it to my list. It's

Ps 18: 50 Great deliverance giveth he to his king; and sheweth mercy to his anointed, to David, and to his seed for evermore.

There are two clauses which link this with us today:

1. As believers, we count ourselves amongst the spiritual seed of Great David's Greater Son
2. 'for evermore' must include the current and future days

This broken society needs a great deliverance and mercy as much as it ever did. But we have a God who is able to do exceeding abundantly more than we could ask or think (Eph 3:20). The favour of any king is to be highly esteemed, but He who is King of Kings and Lord of Lords is favourably disposed to us as his children, the very apple of his eye! His largess is beyond our wildest dreams, and his ability to deliver is almighty.

Stop press:
Pads was sick again while Ally was on the phone to me earlier - not very impressed to have been alone but has consented fully to her coming home for a visit - she's up getting the washing sorted out!