Raw footage

It is with some trepidation that I share the entire video interview which Padi gave for the LATCH film. Only a couple of moments were shaved off, but these extra bits give a real insight into his suffering and paint an even stronger contrast with the 'lighter moments' in the clip.
Ben, the film-maker, kindly supplied us with the uncut footage via the video-sharing site called Vimeo. The interview was conducted by another member of the Brain Tumour Support Group.

Padi LATCH interview with permission: Ben Ewart-Dean (education).

More Pod

With apologies for delays in getting this published, here's the artwork from Pod Clare's latest visit. This time it's some pyrography featuring our two lovely mutts - Moses and Jack. The picture is made by burning marks into wood with a hot stylus - great fun!

We've been finding things tough lately, it has to be said. I've just come to the end of my 5th week on sick leave due to stress. This is related to a troublesome meeting which questioned my role in work. It has dominated my thinking the whole time I've been off. Occupational health have said that there must be another meeting before I can expect to get better but the prospect of the meeting is also not exactly healthful with the week we've just had so I am going to call it off for now.
Last Monday we were told that Pads' chemo was ceasing. This is the temozolomide which we are led to believe has helped to hold the tumour at bay since last summer. Pads has had 14 cycles and that was all he would have: was the message which seemed to come 'out of the blue' . We had come to believe that this chemo would carry on indefinitely since Pads had agreed to carry on taking it. It felt like a light had been switched off unexpectedly.
Thankfully, our consultant was able to fit in a meeting yesterday to explain things. Temozolomide is a cytotoxic drug that kills cancer cells but after a while resistance is built up, so it is used for a finite period of around 12 months as its not believed to give benefit beyond that. The fact that Pads is not going to be on it for the Ellen McArthur trip means he should be in better shape and have a better experience without any of its side-effects. They are proposing to scan him in the early autumn, and prescribe if necessary another chemo tablet, etoposide, it is a little more toxic to the bone marrow than Temozolamide, which Pads has tolerated fantastically. Meanwhile Pads seems to have accepted our explanation of the drug being stopped quite calmly.
Considering all this, we are mindful of our own human frailty and mortality, and the sheer pointlessness of life without God. The splendour of what awaits us who've trusted in Christ makes this life seem like knocking about in a dimly lit broom closet.

Risk

The results of the scan came through yesterday. Pads was due to visit the hospital for a pre-chemo check-up anyway. His bloods are holding up well, he's handling the temozolomide and the dose can safely increase in future if they want it to. Pads was interested to know about the scan findings. We'd looked at the pictures and there was not much change from last time, but change there was: a slight increase in the swelling. The opinion from Birmingham was that the scan was not 'classic medulloblastoma', but it did look more like tumour than radiotherapy changes. Although the 'result' sounded uncertain, so some extent, Pads symptoms have been telling their own story for some time: the consultant did not waste any words telling him. He was ok with it, and went back to playing Risk with Llyr and friends. This game was much enjoyed and had been on the bucket list for some time. However, at dinner, when his left hand was failing him with the cutlery, he became quite upset and took refuge in his room.

Today it was the smalls' school summer fayre and Pads managed to get there for about half an hour. For most of it he sat and did codebreakers, finding the noise and bustle wearing.

Stem-cells back in

The door shut yesterday at 6pm and the nurses started hydrating Pads ready for his stem-cell infusion at 11am this morning. It was nice to have a few more hours of non-isolation yesterday meaning that the play therapist could spend some time with him.
We should have known to read between the lines when all the nurses were saying that this stem-cell therapy is, 'a bit of an anti-climax.' Pads' pre-meds included hydrocortisone, paracetamol, and piriton, and, anticipating any adverse reaction, an array of drugs were to hand, such as Adrenaline. The senior nurse was on tenterhooks as, watched by the entire ward's medical staff, she delved her hands protected by huge gloves into a casket of liquid nitrogen, retrieving the harvested frozen stem-cells, frozen so hard that the bags can rupture without sufficient care. The cells must be infused within 30 minutes or they are useless. Because they're quite viscose, this has been known to confuse the infusion pump. Thankfully, nothing went wrong, which is just as well. Ally asked the consultant whether stem-cell therapy is always required with the chemo Pads had last week. The slightly chilling reply was that it is vital as the dose was lethal. It's not called a 'stem-cell rescue' for nothing!
In himself, Pads varies between able to do not very much and hardly able to even consider doing anything. But he's patient, recognising that this is another day of progress, or at least that another day has passed.

How are you coping?

Pads is feeling quite rough a lot of the time. He brightened up when I was in at 7pm and earlier when I contacted him via Skype during the day. A nosebleed started out of no-where earlier. You get the feeling he's being held together with drugs, now including three antisickness drugs in concert.
He's far from the only patient struggling on the ward. It's hard to know what to say to the other parents, most of whom have no faith. If anyone reading this is prone to bring out the old chestnut that faith is a pathetic 'crutch', many people we talk to, even the health professionals, all recognise the worth of faith in times like this. What are the options? Stoicism? Hedonism? They're far more vapid than the incredible array of despair-busting factors working in the Christian's favour: for example,

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. (Romans 8:18)

and:

we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.(Romans 5:3-5)

But it seems far worse than crass to reel these kinds of things off in the middle of a parent's suffering... We keenly feel the need for wisdom in dealing with everyone who asks, rhetorically or otherwise, 'How are you coping?'

Bed bound anyway

Pads finished chemo dose 4 out of 6 today and so far the Drs are quite pleased with the way his body is coping. The first infusion was thiatipa over 3 hours. For the etopiside, the second infusion, his temperature and BP were taken every half hour, but all remained normal.
Earlier, for most of the morning, he'd struggled to feel well enough to hold down a conversation, the Nintendo DS while listening to an audio book was all he could manage. It seems like mornings are the worst for him at the moment, with the 'explosion' happening around 8am today, two hours later than yesterday. Thankfully he'd had less feed to bring up but it was still unpleasant and strenuous. They're not really worried about how much or what he's eating, although to keep his gut rolling with a trickle is very useful to sustaining its health. They are weighing him every day too. Today he was 38.3 kg. They want him to drink plenty, but, whether he does or no, he's getting 100ml/hr shared between the drip and whatever's going in through the micky button. If he started to retain that fluid, it would signify that his kidneys were starting to decline. Thankfully there's no sign of that yet.
But by the time mum and Reuben arrived, at about noon, he was far brighter. He was pleased to hear that the Drs had agreed he could stop (trying to take) the Daktarin oral gel, which is supposed to suppress thrush, but the consistency is like a slimy grainy toothpaste and he's just not able to face it. It's just adding to his stress, so more trouble than it's worth at the moment.
The medical staff are expecting the isolation to begin after the weekend, so visiting is still possible in short bursts. I've got up and running with skype in the room from Pads' netbook (and a MiFi) so that will be useful to keep audio and visual contact up when the door shuts next week. Although the door is mostly open, even in his better moments, and when he's not connected to any pumps, he has no real desire to move away from his bed.

Settling in

Pads has kept really well, this is in spite of a few nasty colds affecting those around him. He's also had something odd going on with a couple of his toes. None of this has so far got in the way of the High-Dose chemo starting tomorrow. He checked in at 6pm, but was a bit frustrated because he neednt have missed the evening service. He could have had his check-up at 4pm, gone to church, and returned to the hospital in plenty of time to start hydrating him at midnight. Anyway, he's settling in, enjoying the door being propped open for now. Isolation will start later in the week when his immunity is compromised. He will need to be in hospital for up to five weeks, until his blood counts have come back up. Bo and I visited after the service and P'd got stuck into drawing a name badge for the door. He's also decorated the wall with the pictures that came from New Zealand via Meryl.

Consulatation and two bags of blood

P continues well.He did dip a bit: once on Wednesday night, when he felt tired early evening and then last night when the PEG hole was giving him some pain as he cleaned it...., 'oh I wish this all hadnt happened' sort of talk. In both cases it didnt take very long to be back up and bouncing, but it's hard to know what to say sometimes in the midst of these troughs.
After giving a blood sample, P went to the play room and the parents were asked to give consent to the next rash of treatment. His counts are too low to be starting this Sunday, so it'll be from the 15th. He will get the first dose on the Monday. There are three days of a 3 hour infusion of Carboplatin, and then three days of two infusions, 3 hours of Thiotepa and 3 hours of Etopaside. By the end of which he will probably be in isolation. Three days after that, on the Tuesday following, his stem cells are given back (an autologous transplant).
The blood results came back showing he's coming up on the neutrophils (0.7 - anything above 1.0 is good), HB was 7.3. This triggered a blood transfusion. Two bags started at about 7:40pm last night, finishing at midnight. We were in his least favourite room (bit claustrophobic) so he was strongly inclined to stay awake and go home to bed. Thankfully the transfusion passed without incident and now he's in good shape for a few days of normality, we hope. Having said that, he's currently in the Dental Hospital waiting for someone to pull an infant molar. The adult tooth has erupted beneath it without successfully pushing the smaller tooth out and it's locked in place. Our dentist had warned that this tooth could easilly cause infection if it remained or came out during chemo.

Last dose of the cycle

Pads has been feeling quite rough today. He was motivated to visit a dear elderly friend in poor health but just as he was about to leave he took a turn for the worse himself and had to abort. An hour later he was starting the last chemo infusion of this cycle. Once again, it passed without incident. Laughing out loud at 'Cool Runnings' helped pass the time. The nurses changed the ends of his Hickman line tubes and the dressing which covers the area where the line enters his skin. Although the nurse encouraged him to drink plenty, even orange juice is off the menu. I couldnt eat my chicken drumsticks anywhere near him because he couldnt cope with the smell. This is all pretty normal for someone on chemo. In fact, he did enjoy a cup of tea, and he's been tube fed all day, so his fluids are in good shape. But feeling quite ill a lot of the time is starting to get to him, so, small thing, but we're giving him a break from the feed pump overnight.

2 Cycle of Chemo, doses 3 and 4

Well, thankfully, nothing much has happened with these infusions. We got a bit blasé about yesterday's, arriving about an hour late. Not that it mattered. Starting later just means finishing later. Perhaps it's testimony to how relaxing it was at Pete and Sharon's, P playing UNO with theirs and us chatting.

When he started feeling ill this morning we thought it was time to pop a dose of cyclizine through his tube, but this made him very dopey. At the hospital, it took the team a while to decide that there was nothing much wrong with him, and that chemo could go ahead as planned. It went up about 3pm and finished near 7pm.

He's in good spirits although his appetite is nearly nil. So he's back on two bottles of jollup per 24hrs, and we pushed some water through the tube this evening: it all helps flush the chemo away. The dietitian moved him off Pediasure Plus to Osmolite, of which we had a major delivery today. We turned back the two boxes of 10ml syringes though - what a mad waste! We'd never use them. Osmolite, sounding like something off the periodic table, has less fibre and more protien - suitable for a lad of his age.

The consultant is still talking about going straight to hi-dose chemo, rather than having another cycle like the current one. That'll be around the 13th August. An MRI scan is being booked for about then. After the last one, there's no danger of it feeling simply part of the routine.

With three kids gadding about the country, I spent quite a while in church today, helping with jobs in the build-up to our conference. In what must be a fairly unique move in 21st Century chapels, we've actually re-installed three rows of new pews behind the pulpit. Probably the previous owners ripped the originals out in favour of space for 'performances'. That's a shame, if not sacrilege. For us it's inspiring to think of the sanctuary filling up with people being so eager to hear the good news of Jesus Christ preached that they're willing to sit behind rather than miss out on a blessing of eternal worth.

Stalled 2nd cycle begins

With apologies for not posting anything yesterday, I hope you noticed a couple of 'twitter' messages. The advantage of twitter is that it constrains one to 140 characters so it is quicker - you have to be brief and to the point. But at the same time, you can say a vast amount in 140 characters...
After a fairly normal day yesterday, today Pads went to give a blood sample at 9am, and afterwards it was the clinic. I say 'fairly' because the dentist had asked to see him before the high-dose. Teeth can get infected and/or the chemo can play havok with the gums, apparently. In consequence, Pads has a couple of weeks to get a wobbly tooth out himself or we'll be going back to the dentist.
At the clinic, our consultant was struck by how well he was looking... and he is. The thing that's most troubling him at the moment is a hematoma where the surgeons at Bristol, for whom he is bearing a slight grudge, had tried to put the line into his right groin and failed. It's a nasty bruise and makes him hobble quite a bit. It should heal up but... then again... we have to keep a watch on it.
If his blood count was low then chemo would be delayed until it was high enough, probably Tuesday. We returned home to await the results. The call came through that platelets were at 128, with 30 being the critical level. This indicates his bone marrow is still working well. Readings earlier in the week were slightly confounded by transfusions of platelets and blood. So chemo today was 'go': the order was placed for pharmacy to prepare the Etoposide and Carboplatin, and we re-appeared at the hospital at 13:30 for the infusions. This all went routinely over the space of 3 hours so that we left the hospital at 17:45. So the 2nd cycle has begun and will continue like this until Tuesday. Then he'll have a couple of weeks to recover and, somewhere along the way, a decision will be made as to whether to go for a 3rd cycle or go straight into 'high-dose'. At the moment, it looks like the latter option will be chosen, not least because of the trouble that was stirred up with the mic-key infection. We cant help wondering whether, if someone had understood the implications of the mic-key button being too tight, the possible cause of infection, the rather dangerous infection could have been avoided. But with zero white-blood cells, perhaps an infection was inevitable... At least we can be pleased that he came through it, and the harvest was very successful. Also, it was remarkable how his guts normalised, almost as soon as the antibiotics stopped on Wednesday. He's been eating and drinking quite well, but only small amounts. This has been topped up by nightly tube-feeds.

So far so good

We're grateful to report that Pads is getting on ok with this chemo so far, although there are signs it's starting to have an effect, even if that's 'just' psychological!
There was no telling if his body might take an instant dislike to it, and that's not happened. Now on day two, we were able to move on to talking about stem-cell harvest planning in earnest. Pads is just not interested in talking about daily injections of cell-production stimulant. These have to go into the skin, it just works better that way.
They've booked the machine in Bristol for the whole week of the 5th July: that's not because we're expecting to stay the whole week. It's a case of catching his stem cells at their most numerous, which is likely to be on the first or second day. That will require a needle in one arm to take the blood out and, after being filtered, the blood goes back into the Hickman line. He's got a new yellow sticker on his notes that says he's only to have iiradiated blood products. That is to prevent any foreign blood that might get transfused into his body from 'attacking' him.
Although he was getting some worrying symptoms over the weekend, we've talked that over too and pretty much discounted it as being caused by further tumour(s). Coming off steroids can account for feeling ill and the daily mid-day nap is also understandable.
Pads is enjoying getting txts but he's not sure what to reply, other than a simple 'thanks'.
Mum and Pads had a good sleep on Monday night and after chemo, lasting 3 hours, he was discharged and trundled home mid-afternoon with some help from our wheelchair. They'll be back tomorrow morning for another 3 hour infusion. That goes for Friday and Saturday too, although Saturday's is only 2 hours, as just one drug is being given.

Hello carboplatin and etoposide

So Pads had a new drug today, etoposide. He also had carboplatin, which he was switched onto after the cisplatin was thought to be affecting his hearing towards the end of treatment in 2009. This time they're going to be less ginger about side effects in order to give as much of the new treatment regime as possible. Once again, having been buoyant in the morning, he wilted at noon, eventually getting it together again by later on in the afternoon. The dip was at and after the meeting with our consultant and so he was in no mood to welcome the thought of daily injections into his skin. These are the stem-cell stimulant. He won't even have a new needle prick every day, the plan is to use a type of cannula. We're grateful that he was fine to have the chemo, which took about 3 hours, or was it 5... anyway, we won't know how he's reacting to the new treatment until after the drugs start to really take effect, sometime next week.
Later on a couple of his dressings were painstakingly removed. The one near his left collar bone has been quite inhibiting so now he feels a lot freer.
He's been getting regular messages via his mobile phone although I dont think his responses are especially inspired :-) Again, just let me know if you want the number.
In other news, Moli completed her series of exams towards a Welsh GCSE, Ash was off school feeling exhausted and Bo was rather sad at having his bike stolen overnight last night. We've already had offers of help with this and he could, of course, use Pads' bike, but it was a shame all the same.

Tentative treatment plan v1

So Pads left hospital yesterday at about 3pm after a slight hiccup. With three cuts, two punctures and a shuffled belly, it was hard to get comfortable on Tuesday night and we think that contributed to a nasty back spasm: he was worried it was another tumour. Pain relief eased it and eventually he got home looking 'stiff as a board'. We've encouraged him to move about though today and the wii clearly helps motivate that.

In the absence of the lumbar puncture result, I spent a while getting my head around the treatment plan. Pads had not realised how long it would take and we are feeling it's looking pretty harsh. The visiting nurse was just on the phone though and she was reassuring us that they wouldn't put us through it if it wasn't worth trying.

Click on the image if you want to see it all or get a bigger version. Supposing you can read my scrawl, the dates are all highly subject to how well he is able to take the higher dose chemo, thus they're on a whiteboard. To explain one thing, they may decide that he cannot tolerate 3 cycles of high-dose chemo. In which case, they'll stick with two cycles of that and move straight to the 'mega-dose' chemo, bringing the treatment end date within October, but this is all highly tentative.

Digesting further treatment plans

Ally and I had a 90 minute meeting with the consultant at 11:30am. Ally'd done some reading and had a list of questions handy.
We still have the option of visiting Alderhay but we have Dr Pizer's advice and none of us feel the need to meet up with him. So we're digesting the suggested treatment regime. First thing is to check that there are no tumour spore cells mobile in his spinal fluid. This will require a 'lumbar puncture'. It is hoped that this can be arranged within a week or so. Under the same general anaesthetic he could then get a Mic-key button, instead of george, and the portacath could be replaced by a Hickman line. The latter would mean that he'd need less needles, come the treatment. Assuming the lumbar puncture comes back clear, the treatment would last about six months. It would involve two or three cycles of 'normal chemo', and injections to stimulate stem-cell production, in order to harvest stem cells. The actual harvesting would be done in Bristol (as they have a licence for that). All that is in preparation for a burst of 'high-dose' chemo. This is intended to knock out any fast-dividing tumour cells, but this hits good cells too. Although he'd have had his own stem-cells back, he would be very vulnerable to infection for 3-4 weeks. So he would have to be in isolation in hospital for that time. Once he'd recovered from that, there would be a short course of focussed radiotherapy, perhaps 2-3 weeks.
It would be fair to say that he's not best pleased with all of this. It's taking a bit of digesting for all of us. The main thing is that this still gives us a further chance of cure, and, in any case, it'll give whatever tumour is there a right going over.
Right now Pads is taking his agression out on the characters of his new Lego Indiana Jones DS game, declaring things about 'the war on tumour has begun'. His pain from the surgery is pretty low level now: just paracetamol.