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).

Treatment ends

OK - so that's radiotherapy, the whole treatment in fact, done and dusted. Pads was receiving all manner of plaudits from the staff of the Heath and Velindre for the way he's gone through everything. He's pleased that the radiotherapy is over, hasnt been sick today. He took his shoes and jumper off, and lobbed his hat behind him and it nearly hit one of the staff. They all find him a delight. He had the consultant in the Heath and her Reg in stitches at the clinic.
This is the countdown chart, all filled in. Fair play to Hollie, she'd shown a great deal of invention to come up with this 'Walk on the Wild Side' effort.

Rough and ready

Pads has had a pretty rough day today. He was sick this morning at 7:40am and then tonight at 10:30 Both times he was under the influence of antiemetics but they clearly did not help much this time.
Earlier he'd been to the audiology clinic, finally got to see the hearing specialist. He's diagnosed with high-frequency hearing loss. So the prospect of hearing aids was disappointing at first but he's more than keen to get on with it now, especially as he's told it will deal with his constant tinnitus. The hearing Dr, whom Pads been waiting for four weeks to see, was interested to know who else he'd known wearing hearing aids. Apparently his are going to be fairly small and should arrive in two weeks or so.
Radiotherapy today passed off quite swiftly. He actually thwacked the senior two radiotherapists while pinned to the slab. With that foul tasting lump of white plastic holding his face in place, it's his only recourse if they start teasing him.
Boaz is missing Asher sorely. A's gone to Llangranog, and B is at a loss... 'I really miss him','him being away is a pain'!

First dose over with

Pads coped very well with the discomfort of being firmly bolted to the slab for radiotherapy today. It is great to just have four doses, lasting about 20 minutes. The radiotherapists take good care of him though. Afterwards, Hollie had been very busy working up something special by way of a countdown chart.

He's not into the usual 'teenager' stuff, or sport (much). The best we could do was come up with the comedy wildlife voice-over series on the BBC that the family watches occasionally on i-player. Perhaps they were remembering last time, when he found it almost impossible to choose a sticker for his tardis count-down chart (from their slightly 'young' selection)... he's got an envelope for each day, with a special animal picture taken from the series inside it. Today it was 'Sid', whose conscience calls to him from another tree...

CT scan

Yesterday the tutor, who is very sensitive, could tell he wasn't up to much and so they just watched a chunk of 'The Ten Commandments' together, having been talking about Moses recently (not the dog!). In the afternoon I suggested to Pads that he might like to think about getting dressed out of his PJ's, but he just cringed and sighed... "I've had such a lot going on lately".
Today it was more of the same, having to be in the clinic by 10:30. We discussed his nutrition: one of his bottles of Osmalite is going over to Jevity (with added fibre) in order to try and settle his tum a bit. Other than that, they continue to be very pleased with him, they only want to see him once next week. He then went to the ward to give a blood sample and there was more waiting around at Velindre. The CT scan promised to be fairly routine, however, the mask was rather tight on his top lip and he became distressed. The radiographer had to file away at the mask and adjust the strips. They were very patient and gentle with him. The scan itself took about 30 minutes. The CT and MRI scans will be combined to try and get as accurate a picture for planning the scan as possible. Another quiet day is called for on Saturday...

Mask day, for the second time

This mask fitting was quite a bit more challenging than the first time, two years ago, but he still sailed through it! He was clamped to a table by his top teeth and forehead for as long at it took to build up the mask and let it set - a total of about 45 minutes. He also got a look at and a play with the machine that'll be doing the zapping.

To Velindre for an MRI

Pads wasnt up to much on Sunday. He tried to come out but we had to abort and settle for an even quieter day than initially planned. Monday passed reasonably without incident. Today, After an uneventful visit to the ward to give a sample of blood and see the consultant, it was off to see another one: the consultant who handles the radiotherapy, 'Any questions for me?' he asked, 'Can we go now?'
Pads has seen it all before and rarely wants to know more than he needs to for the immediate future anyway. It is easy to assume that P is simply being a cheesed off teenager, but generally he's just being his normal placid self. He was slightly alarmed at the idea of part of his brain being thoroughly zapped. But the consultant is still writing sentences with the word 'cure' in them, i.e. on the consent form that Pads is old enough to sign now, along with a parent.

 The type of radiotherapy is called 'stereotactic'. There will only be 4 doses, instead of the three weeks we had been formerly advised. This short treatment should entail far less side-effects and it's on a 'forgiving' area of the brain, as evidenced by the negligable impact two lots of brain surgery has had. The idea is to zap a very precisely defined area, the site of the previous tumour. Today's scan, an MRI, was intended to inform that targetting. It's a noisy machine, but thankfully did not take too long today... possibly 30 minutes in total: not quite long enough for his claustrophobia to kick in. The worst bit was having a needle to inject dye - no amount of these can make them easier.
We had a chat with a number of radiotherapists, especially the one who was explaining how his mask is going to be made tomorrow. There was the usual head scratching, trying to think of a suitable treat, or something he was 'into'... in the end I suggested a comic, so we'll see whether that fits the bill tomorrow. She wanted to know what his tactic was for keeping still in the MRI, but he was unable to verbalise it, he just seems to relax and endure.
The picture is Pads being towed on one of the quirky Velindre wheelchairs. The 'steering' wheels are at the back so making them as awkward as a shopping trolley to push.

Radiotherapy is finished

Pads in good form having completed his course of radiotherapy - yahoo! Now he's getting geared up to watch Wales play Canada at the Millennium stadium!

1st zapping session

Pads stayed very still for his radiotherapy. He was quite worried about it, especially from still having discomfort from the portacath on his right flank. He flinched at the radiographer saying that today's would be the longest treatment - it lasted about 30 minutes. A lot of time was taken moving him into different positions - the zapping only lasted a matter of seconds at a time. He was very chirpy and relieved when it was over.
We were having an extended prayer meeting at church from 5.30pm, and he was able to go to that. But, by 6pm, two hours after the treatment, just as we had been told, he started to feel increasingly giddy. This has stayed with him, stopping him sleeping until just a few moments ago. In bed he wanted to check if this was going to happen after each treatment. I could only say that the nausea is supposed to decrease as the weeks go by, although tiredness increases, and with that he was back to wishing it had never happened. Fair enough. But then again, our Pastor was leading the meeting from the book of Job whose sufferings and patience are proverbial. Is this a God of caprice? Job admits that something very wonderful will result: 'But he knoweth the way that I take: when he hath tried me, I shall come forth as gold.' Job 23:10 Just one glimpse of the cross of Calvary should be enough to show that there's more to suffering than the pain.

the 'low down'

Padrig went to school today for the morning and then came home a lunch which was fairly shocking in terms of volume. My vision of having to hire our own Asda delivery truck when (DV) they are all in their teens seemed to have materialised early with P. He hoovered up a heap of food and then, when on the way to Velidre hospital, realised with dread that he'd left his 'emergency twix' behind ('in case you got talking' - this was having already asked 'what's for tea'). Moli's still awaiting 'lift-off' into secondary school, so she was on hand with the camera during mask-making.
The radiology Dr was very impressed with his having been to school so soon after sugery. He didnt think the second opinion of the histology would do much to change the treatment.
So, Pads is lined up for 'very agressive treatment': 33 'fractions' of radiotherapy, starting 1st October. This will take place daily on weekdays - mostly after school. He'll also get a regular injection of vincristine. After that he'll move onto a number of cycles of chemo with three drugs, vincristine, cisplatin, and lomustine. This will continue until next summer and will knock him very hard. It's fairly standard that this is going to make him feel very tired with feelings of sickness, sore throat and skin, loss of appetite and hence weight, loss of sensation in peripheral nerves. It feels a bit like leading the child, the child you would normally feel content to lay down your life for, to the brink of a dark tunnel, only to meet them out the other side a much diminished person. But, although he's been dependent on us as parents for 10 years, we cant enter the tunnel for him, 'with' him will have to do. We have been prepared for some daunting long term effects: these are to do with the fact that quite a lot in his body that's merrily growing now is going to get knocked flat. So, this means his growth. He will lose a couple of inches. Thankfully that's not too bad as we're pretty tall anyway. He's likely to always have thinned out hair at the back. The one that really gave pause for thought was the likely permanent loss of IQ - to the extent that we could not expect him to make university. Getting GCSE's will be a massive achievement and then he will enter some kind of vocational training. P is pretty bright, far from genius, but in the upper 10-20% of the class currently. As parents we have to consider exactly what it is we want for the children, not as if we have a huge amount of control over it anyway. One fall, one bump on the head can render the cleverest into a persistent vegetative state. Pads can still be valiant, industrious, committed, skilled, a pillar, a star! - just not especially bright. It is and will be a privilege just to share the planet for as long as God grants with him for this, his 2nd life.
Meanwhile, here he is, with Asher, just after gaining Cub Scouting's highest, the Silver award.
Tomorrow he's off for MRI scan which will involve another needle - this time for dye to give better contrast on the scan. Then he should be ok for school again but back to Velindre for the second part of making the mask.