Bo's Show

Yesterday was calmer. Padi had an increase in the midazolam dose. When we got back from Boaz's Year 6 leavers show, Padi was even trying to talk a bit. A lot of it was too faint to catch and it was not possible to get clarification. But he said, 'good night Bo' distinctly. With greater confidence that he was listening, I chose to read his favorite Psalm, the 46th, for our evening devotions to God, 'who answered me in the day of my distress, and was with me in the way which I went.' (Genesis 35:3).
Boaz played one of two scarecrows in The Wizard of Oz. He was also one of four children awarded with a trophy recognising their excellent contribution to school life right from their first year. This was the first of its kind, named after one of the parents who passed away last year, Brian Hibbard, and presented by his widow.
Three of the group of Padi's friends from his time at Mynydd Buchan were helping backstage. They are part of the group raising funds as 'Pray4Padi' and took the opportunity to shake a bucket for the Kids Cancer Charity as people left.
We've had a quiet night too. Padi's mouth breathing varies in depth and noise. He occasionally coughs strongly to clear his chest. I pop a few drops of water into his mouth with a syringe now and again and use cotton buds to line his tongue with 'oralbalance' gel.

Calm

Just to report that, thankfully, Pads has had a calm day with just one call for breakthrough relief this morning. We've also enjoyed a calmer house, although I was out today at Boaz's final mabolgampau (sports day, in which he won 3 medals) in the morning and then the prayer meeting tonight. Pads is not able to communicate very well, has trouble finding his words, especially in finishing a sentence. This morning he was fairly insistent wanting to see Jane, the nurse, but we couldn't get out of him what he wanted her for... He asked mum 'what happens next?' Without being able to get clarification, she assumed he was referring to the progress of his disease. We've always kept him informed so she gave the explanation which the doctor gave last week, i.e. that the tumour is spreading along nerves and coverings of the brain towards the brain stem so that would likely mean he 'forgets' to breathe. His breathing in the nights is usually noisily reassuring but we turn his fan off to hear it more clearly. It's quite likely that we will not notice his passing. We were telling the other kids this at tea tonight with predictable effects.
I felt really helped by the Bible Study tonight. Mr Higham asked, 'Are you wealthy? What help is that in bereavement? The Christian has infinite resources in Jesus Christ to draw upon'. For example, Jesus said he is 'The Resurrection and the Life'. Miraculously, Jairus had his daughter raised from the dead by Jesus, only for her to die again years later. My son will rise again to live forever. It is a spiritual reality and a strong consolation.

Hello ketamine

The night was again fairly calm and today has been a lot better than yesterday in terms of Padi's pain. There is an increase in his medication (adding ketamine and increasing medazolam) but the main thing that's causing his semi-conscious state is tumour activity. We have a picture of spread along nerve coverings rather than a mass anywhere very specific. He had two hits of breakthough pain: 7am and then at just after 12 noon. At one point he yelped and I sprung up to ask what was the matter but he couldnt tell me. People who have not seen him since last Friday are getting a bit of a shock at how unresponsive he is.
I took the opportunity to take the smalls and a friend off to Southerndown for a dip. It was good to get out with the boys, not least because Bo's had some treatment on his eye that was pretty challenging. A probe was used to perforate a tear duct membrane that's outstayed its welcome from birth. Thankfully the opthamologist held back from doing the other eye without a GA, one was quite enough!

Happy distractions

While there are very profound things afoot in our home, there are also a number of funny moments which give the contrast. Cleo is pretty hilarious, when she's not trying to scale the garden walls. I captured a short video of her 'performing' yesterday. I took the liberty of adding a little 'disco' which makes it seem like she's using a workout video.
This morning a surprise arrived from friends overseas wanting to cheer us up. It worked! The biggest smile of the day so far goes to Boaz who got to open a hamper full of 'retro' sweets:

Another source of fascination/distraction has been our 'pet' tadpoles. This morning we noticed one of the really small ones has front legs now, as well as spindly back ones. As per instructions available on the Web, we've reared them on rainwater and boiled lettuce. To read more, this link goes to a video of them on Google +.
Pads has had a very quiet night. I could hardly rouse him at all this morning for his early medication - it feels like torture getting him to take these tablets when he's so deeply asleep. We give what we can through the PEG tube but mostly he has to wake up enough to swallow at least 4 tablets with one gulp. The usual incentive is a cup of fresh water after a night of mouth breathing. But I had to resort to playing something on YouTube before he came-to enough. A few days of being quite awake during the day have caught up on him. Also, the new bed is fantastically comfy and does not crackle like the mattress topper he'd been lying on over the weekend.

15th Birthday came and went

Pads' birthday on Wednesday got off to a slow start with there being little chance of his siblings seeing him before they left for school so we reserved celebrations for afterwards. Llŷr wanted to take him to the Hobbit and we hit on the afternoon of the 19th. In fact, ever since it's been on the 'radar', he's been hoping to see it, but when the release dates of the three films (a year apart starting late 2012) were announced it seemed unlikely and we felt a little aggrieved by the delay. We're through his birthday and at least one of the Hobbit mileposts; these events seem so large and real as we're given to approach and experience them, and then they fade into fragments of memory.

Fading is the worldling's pleasure,
All his boasted pomp and show:
Solid joys and lasting treasure,
None but Zion's children know.
John Newton

How transient life is! Pads courage has been challenged again this week by starting a new course of chemotherapy designed to give symptomatic relief. There is a slight risk that it will affect his hair. Thankfully he's willing to trust the medics and 'just gets on with it', where 'it' includes swallowing really big tablets that have to be handled wearing a protective glove - the drug is etoposide.
For someone with particular requirements, the best idea for a present for Pads was a new Nintendo 3D games console - he did not know what to say. The chance of having a turn on this might encourage Boaz to work hard at wearing his patch (as he can has only been able to see in two dimensions). Bo's taken the original DS into school of 'toy day' today, his last at primary school! It's been very hard to find the slots and we certainly do not always succeed with that, but there are hints that the vision in his right eye is slightly improved. He's always supposed to be wearing his glasses, but they went missing for the Christmas Service last week. He did a great job of singing and is justifiably proud of the projected picture that he drew, it happened to be up at the same time as his slot on stage.

We've always been pleased that the school tries hard to represent the true meaning of Christmas. So many others we hear of have mini pantomimes about 'the lost star' or 'the lonely Christmas tree' and avoid any reference to the historical and momentous fact of the incarnation.

Patching up

Pads has been getting neck pain over other few days and asks for 'breakthrough' pain relief, which amounts to two paracetamol and that generally works. Although this is making us all slightly jittery, we were operating with less fentanyl since half term. I say 'were' because we discussed the situation with our nurse last week and it was agreed to go back up to the 36 micrograms/hour (from 25). Yesterday he slept out the morning but then was pretty lively for the rest of the day. I made the mistake of tickling his knee while we were on the sofa in the afternoon - he always insists on 'having the last laugh', jab, or poke in these situations, in spite of spending several minutes in an arm lock. In the end I usually give up and let him win.
There are 'early bird' tickets available for RIAT next summer and this allowed me to ask Pads if he wanted to go again. 'So long as it doesnt rain!', he replied, recalling this year's downpours... He has happy memories of using the scooter, even though initially he was pretty upset at the prospect of riding a 'granny-mobile'.
In other news, Bo's been finding it really tough since attending the orthoptic clinic last week. Something had 'happened' to the referral from the optician and the hospital, but Ally chased it up and we got a cancellation. He now has to spend ideally four hours or more a day wearing a patch on his good eye, which renders his vision severely impaired. We can break this up into two 2 hour sessions but finding those slots in a day can be difficult. The idea is to tell his brain and the related nerves that he still needs his 'lazy' eye. There is a small chance that this will work and they're giving it until the end of January to find out for sure. If things improve by then they may suggest extending the period of patching. If not then he'll have to cope, as he has done thus far, with one good eye. To give you an idea of how limited his vision in that eye is, the orthoptist was walking towards him with a four inch high letter 'O', asking him to say when he could tell what letter it was. Bo stopped her at about 2 yards distant. So, although his other eye is perfect, the idea is to get the lazy eye working as well as possible in case something happens and he needs a 'good spare'. He was really quite low about this on Friday, given that he cant see to even eat or walk around when patched.
On Saturday I was trying to convey how important these next weeks and months are by using a chat session between two computers in the house. I was being 'Boaz at 12 years old':

BOAZ! It's yourself talking to you from the future! I've just opened a wormhole in the space-time continuum to bring you a really important message.
You see, something bad happened the other day I need to tell you about.
I was playing with Jack and he shook the stick in his mouth and it hit my eye full on.
Now I have to wear a plaster on my good eye until it heals up.
I know I/you really did not like wearing the patch for those few days you tried it and gave up.
But I really wish I'd tried harder to make my 'bad' eye get better.
If only I could have stuck at it...
The doctor says there's nothing they can do now to make my sight better in my bad eye.
I am worried I'm going to be almost blind now for the rest of my days...

I do not think this helped as much as the prayer of his 3yo cousin, which went something like this: 'Lord God, thank you for Jesus, thank you for Boaz, thank you for Boaz's eyes, thank you for Boaz's plaster for his eyes, please make Boaz's eye better. Amen'

Goodbye James

James has been a regular visitor for best part of a year. He's a psychologist and has helped Pads face up to elements of the challenge his cancer presents to daily life, a large part of which is a battle for the mind. He's managed to get another job as the term of the one which brought him to Pads drew to an end. We're sorry to lose his contribution. Thankfully Pads still has Ann, the play therapist and they go way back. It's just that James' role allowed him to be a little more challenging.
The picture is of Bo's new specs. We had a bit of a shock two weeks ago when Ally arranged an eye check-up for the kids. Bo said he couldn't read the top line with his right eye! It seems that this was never picked up, he's just been 'making do' all this time. The optician was very concerned that Bo was too old for them to be able to correct the problem. If you have or know anyone under seven, get them to have their eyes tested. You may have seen small children with a 'lazy eye' correcting patch or specs. The optician, saying that the eye nerves may have shut down completely, referred Bo to the hospital eye clinic. They came back suggesting that he tried glasses at least until he rose up the waiting list. Thick as they are, the right lens is only 80% of his prescription, so as to ease him in a bit. It is pretty challenging, but he has been brilliant about wearing the glasses. With them on he says that he can see a bit with the right eye and that's encouraging that some improvement might be made.

Continuing chemo and life in general

Thankfully, Bo's 10th birthday party went well. We were at the 'Theatrical Makeup Workshop. One or two of the boys actually started to feel a bit squiffy at the scenes and had to be taken out to recover. None of them will forget it easily.

Pads was in good form, in spite of being up since 7:30am. He was at Ruth's overnight again having gone there for a hot-tub yesterday. On Thursday, the consultant visited and she was pretty impressed with his condition. They agreed that Pads would continue with the temozolomide cycles until at least July, when he's due to go on the Ellen MacArthur trip again. We seem to have come a long way from last autumn when the decline in Pads condition seems to have more-or-less paused. With such a slow deterioration, hardly noticeable really, our minds turn to thinking about how we can make the most of the time. In a sense, this is no different from what we should be doing anyway. 

Happy Easter!

Happy Easter from all of us! Bo's school wanted the pupils to create an Easter Chick or Bunny from re-cycled materials but the gang thought we could do better than that. This rugged cross, the nails, the impression of a blood-stained body, the 'green hill' (as per the famous hymn, 'There is a green hill far away, outside the city wall, where the dear Lord was crucified, who died to save us all'). As it's the holidays, we had family worship later than usual this morning and Pads was pretty bright when I went in to deal with the feed pump and give his meds so he descended to the kitchen to join us. Following Mr Higham's excellent sermon yesterday on Watching the Crucifixion we read the latter part of John 19 and thought for a bit about different opinions that people have of the cross. Everyone has an opinion, what's yours?
Where I was staying in Holland, near the Belgium border, shrines like the one in the picture below are everywhere...

4km west of the campsite is Mariadorp where there is a church with a massive neon cross that can be seen for many miles around at night especially. But it is not merely seeing a cross which we need, it is the Person who died upon it. We thought about the significance of the blood and water which flowed when Jesus was stuck with a soldier's spear. A couple of weeks ago I was at the Birmingham conference with Jonathan Stobbs preaching from Zechariah 13. He made the point that blood and water were key to the temple and tabernacle sacrificial systems of the Old Testament. The water for cleansing, the blood for atoning - both of these are richly supplied in the Saviour, whose conquered death through death, once for all. Bonar's hymn sums it up well...

No blood, no altar now, The sacrifice is o'er! No flame, no smoke ascends on high, The lamb is slain no more, But richer blood has flowed from nobler veins, To purge the soul from guilt, and cleanse the reddest stains. 

We thank Thee for the blood, The blood of Christ, Thy Son: The blood by which our peace is made, Our victory is won: Great victory o'er hell, and sin, and woe, That needs no second fight, and leaves no second foe. 

We thank Thee for the grace, Descending from above, That overflows our widest guilt, The'eternal Father's love. Love of the Father's everlasting Son, Love of the Holy Ghost, Jehovah, Three in One.

We thank Thee for the hope, So glad, and sure, and clear; It holds the drooping spirit up Till the long dawn appear; Fair hope! with what a sunshine does it cheer Our roughest path on earth, our dreariest desert here. 

We thank Thee for the crown Of glory and of life; 'Tis no poor with'ring wreath of earth, Man's prize in mortal strife; 'Tis incorruptible as is the throne, The kingdom of our God and His incarnate Son. 

It was great to be back together again, I'd returned from Holland on Thursday afternoon. It was the 'networked learning' conference, which doesnt sound very exciting but I had enough of an adventure with rambling, camping, cycling, and trains in Maastricht, AirBnB in Brussels, etc. etc. Photos are here.
Pads' visiting psychologist had been sharing with Ally some of the work he'd been doing. It was along the lines of trying to help Pads see that he feels better for having got up. He certainly does try but often it is only through terrific effort and will-power that he can overcome the desire to stay put in his room. When he really cant manage to come out he finds it hard to bear.

Will power

Boaz has been performing lately, Asher too in his Eisteddfod. Boaz did that but also was highly excited to sing with his friends at the local eisteddfod and really enjoyed it. Last Friday he was at the St David's Hall singing with the same friends at a concert to raise money for Banardo's. Earlier that day, Pads wasn't up for going to the clinic - too tired. But it enabled Ally to have a good long chat with our consultant.  They had a look at the CT scan from the week before. It showed that there really is no further swelling. However, just from the way we're now talking about him, she could tell he has been more tired of late. Yesterday, in spite of spending Friday and Saturday in bed, he was feeling rotten and it took a monumental effort by him to get up and dressed and out to the evening service.

Then he was in good form again,enjoying the sermon and fellowship afterwards.

The doctor was talking about reviewing the treatment, as 12 cycles is a natural point at which to do that and we're at number 10. There is no telling what might happen if the oral chemo (http://en.wikipedia.org/wiki/Temozolomide ) was stopped after that, but with Pads wanting to go on the Ellen McArthur trip again, that would take him up to 14 cycles... We're skirting the fine line which defines 'quality of life.'

The wise men

Pads did very little yesterday. He came downstairs for an hour to watch a programme and the fire was lit so it was warm. Today he was still worn out but, thankfully he was able to make it to Bo's Christmas show. The kids really enjoyed singing the nativity to Abba tunes. This slideshow is them goofing around afterwards.

Christmas cards - a bridge too far

Sorry to anyone expecting a Christmas card this year - they're bought, but for this year we're sending out a newsy letter intead - it's just small thing that we can do to ease the pressures of Advent (so much for the early night).
I do need to add that Boaz is still standing after the others were at home ill all day. Pad's blood results (sample taken this morning) showed he's ok on HB, platelets, white-blood cells, but he is fairly neutrapenic. This should start to pick up too before long.
Today was a remarkable day because of the arrival of thousands of copies of our new hymn book. You can read all about the why's and wherefores at the Christian Worship Website.