From the archive 20130516

This photo was taken by me 6 years ago and automatically saved in the cloud-based google photos. Today it was resurrected in a mobile phone notification. If you use social media for a while, it will occasionally throw up a picture from your past as a marketing tactic. I suppose they're thinking that most of the time people take photos of happy things and like to be reminded of them. However, even though I take a lot of photos, I'm sure I'm not alone finding these reminders can have varied impacts. Pads is on the way to a hot-tub rubbing his neck, the all too familiar pain site. He was pretty wrecked by this time and the palliative pain meds, while massive, were not quite as effective as we had hoped. 

Phenobarbital driver too

Padi was in a lot of pain again this morning. He was expressing the feeling that his head was under pressure and the pain was especially severe in his eyes. With buccal diamorphine 120mg, midazolam 2.5mg and fentanyl 400mg on board his pain levelled off for a while. Then, when he was watching a film with Moli, who was also earning her keep with a spot of ironing, the pain suddenly came back again. It reminded us of the trip back from France in 2008 when Padi regularly yelped in pain all the way home.
The increased steroids and diamorphine doses of the last couple of days clearly had not worked. It was decided to put up another syringe driver, this time delivering phenobarbital (which cannot be mixed with another drug). As a result, he is quite sedated and we are expecting him to be knocked out for a couple of days. So Pads now has two 'sub-cut' drivers, one delivering to his left arm and the other to his tummy.
When not in pain and not sleeping, his dry wit is never far from the room and he polished off a fair amount of food today, including the scrambled egg on toast this evening.

Upping the steroids

In the face of regular bouts of pain requiring breakthrough medication, the team has decided to increase the steroid dose for a few days to see if that helps (from 2 to 8mg per day).
We, Padi included, would be very grateful if you would pray for him concerning this pain.

Update (9pm) Thankfully, P dropped off to sleep at 8:30pm having enjoyed some relief from the pain. He resumed his codebreaker book and enjoyed evening family worship. 

Content

I was really pleased with the way the NHS optometry clinic were willing to increase the power of the prism in Padi's glasses last week without any fuss or insisting on an appoinment. The prism is simply a piece of clear plastic with wedge-shaped grooves. It adheres to one side of a pair of glasses without any strength in their lenses. Pads had given up on this in favour of a patch but now the specs are back in service. This picture shows the effect of the prism (actually the wrong way around for Padi, the wearer) by holding it half over the camera lens. Pads eyes do not then have to try so hard to bring the two images together for near or far viewing.

He seems to be needing a dose of breakthrough pain relief most mornings but is usually then fine for the day. Last Friday was an exception to that when he had a nasty pain behind his eye. The consultant visited today and we discussed that incident at length. His best guess is that it was a migrane although he couldnt be certain since the whole episode only lasted an hour and went away quickly without sleep. We are grateful that generally Padi sleeps well and is fairly bright from 8am to 8pm. Today he watched a film with his sister, met with Ann the play therapist and then entertained five of his friends from Glan Taf.
Pads has been in really good form. Yesterday he enjoyed three live-streamed services from his room, including the afternoon Capel y Rhath one in Welsh. Alun Higham was challenging the congregation to compare the riches of the gospel with the tawdry or at least temporary enjoyments of this world.
Reflecting on the day, Pads said, 'We should thank God for our great pastor who preaches Christ, the only way to salvation.' He is living proof of the truth that, 'godliness with contentment is great gain.' 1 Timothy 6:6 He said that the live feed ( streamed video) is aptly named because it's ' living food ', spiritually speaking. You should try some!

480

The dose in the syringe driver went up yesterday to 480 after Padi revealed he had been having fairly constant pain, not just the jabs that require breakthrough relief. In spite of this he had three lots today. Tonight at family prayers he asked the Lord that he might not suffer too much.

Comfortable

Pads' bed is so comfy and easy to adjust, he's happy to stay there - wasn't interested in another trip to the caravan in Porthcawl when we suggested it yesterday. We certainly couldn't offer the same level of comfort out at Trecco Bay and so much time is spent in bed now. On Saturday, we said goodnight at 7:30pm and he slept, with only a break for taking the morning medication, until 3:10pm on Sunday. He's been more awake yesterday and today.
He's needed two lots of breakthrough pain relief this morning (90mg of Sevredol) although there's no indication that the needle is making the injection site 'unhappy', so the MDT meeting tomorrow may well result in putting the syringe driver dose up again.
I'd popped in to work this morning briefly for a IT lab 'drop-in' session. A conversation with a colleague in the library reminded me of why I enjoy my job but, starting my 5th week on a 'fit note', I was glad to get back home. There I made Pads a cuppa and played him Bob Dickie's latest 'vodcast'. Pads was especially struck by Pastor Bob's reciting of Mr Higham's hymn, Great is the Gospel of our glorious God, 'beautiful', he said repeatedly. We're all very concerned for Bob and Mary, his wife, as she's undergoing treatment for cancer at the moment. This is my compilation from when they visited last year for a fellowship reception.

(Another) new plateau

We had a torrid time a couple of weeks ago trying to keep Pads pain under control and eventually moved to the syringe driver as opposed to fentanyl patches. This move was foreseen and something of a Rubicon in everyone's minds, not least Padi's. He worried that the device would hamper his movements. In fact he has continued to be able to enjoy the things he did before and he has mentioned wanting to do more. Quite how that could turn out is hard to picture, but he did get to church on Sunday night and was in the tub on Monday.

People who are very ill often 'come and go', to the astonishment of those caring for them or looking on. He had a lovely letter from the the Head of Year 10 and SENCO yesterday. He'd already mentioned school earlier this week; last night he descended the stairs with the express intention of using the Wii-Fit game (involves standing on a 'balance board'). This turned into a less improbable Wii Sports Resort session with Asher. Ross and Amy arrived from Scotland having been briefed by Rhys on the way from the airport not to expect too much and imagine their surprise when their first sight of Pads was of him doing something completely normal!
It is certainly typical of Pads who, over the last five years, has seemed to be spiralling downwards only to level off and continue on that plane for a while. Who are we to stymie his ambitions?

Tub then pump

Yesterday, when we realised we were aiming to get Pads a hot tub today it also occurred to us that he might be hampered by installing the syringe driver. That relies on a constantly attached subcutaneous needle and we're unlikely to want to get the injection site wet. So we had a chat with the team and decided to put the patch up to 200ug and give sevradol at bedtime. Retiring in some trepidation, thankfully we were only disturbed once in the night, and that wasnt for pain. So the plan is to pop to the tub and then get connected up to the driver.
Because Pads is often sleepy in the mornings, we try and have family worship in his room at night. Last night he asserted that he wants to take part in the morning event too. We were happy to cram into his room at 7:20am and read Revelation 4 with him. There is the majestic vision of glory and the Eternal Omnipotent God. This book was written to encourage the church. No matter what we face, God is in control and is working all things out according to the counsel of His supreme wisdom.

Thou art worthy, O Lord, to receive glory and honour and power: for thou hast created all things, and for thy pleasure they are and were created. (Rev 4:11)

Spurgeon helping us count our blessings

I've reproduced this extended quote after a night of 2-hourly administration of breakthrough pain relief. It seems likely that we'll move to a syringe driver today.

CH Spurgeon's Autobiography (Volume 2) records the following concerning one of his most significant experiences:

After enforced rest he was back in his pulpit on Sunday, April 23, but weeks of pain followed. Through May and June, 1871, when he should have been on a previously-arranged continental tour, he lay suffering. In a letter to the congregation at the Tabernacle he opened his heart to them:

'Clapham.

Dear Friends,

The furnace still glows around me. Since I last preached to you, I have been brought very low; my flesh has been tortured with pain, and my spirit has been prostrate with depression. Yet, in all this, I see and submit to my Father's hand; yea, more, I bless Him that His paternal love has been more than ever dear to me. With some difficulty, I write these lines in my bed, mingling them with the groans of pain and the songs of hope...

Struggling with the pain

Now that the steroids are at a residual dose again the pain in Padi's neck is back. He had break-through relief last night, woke up with it in the early hours and now is digesting another sevredol. It takes a while to work but Ally's on the phone to the nurse because we'll soon run out of medication at this rate.

History (not)

Padi made it to school yesterday but it involved a struggle, not least for mum who had several unexpected but important things happening at once. She and Pads really enjoyed hearing from Will and Vic in Melbourne though. He had been awake since dawn so he was tired but also no longer feels able for academic work. Really the trip was a social event, part of persuading him was reminding him that he'd announced his plan to go in on Facebook (this having attracted 20 'likes') so he couldn't very well renege. His cousin Llyr (normally at university) was also in the frame to help take him in.
In the event, the SENCO helped organise a session with his friends, this which set up a level of conflict for Pads because although he greatly enjoyed being with these 8 or so, he regretted that they had to miss History on his behalf. However it may not happen again. From reports, I think some of them are finding it particularly hard to cope emotionally with what's going on and it speaks volumes about the impact Padi and his situation is having in unexpected quarters and ways.
Just one dose of breakthrough pain relief, last evening (sevredol - so we routinely add in both types of anti-itch meds).

The need for feed

After a bit of a trial last week, and we've discussed it with our nurse, we're putting Pads on a 'see-food' diet. Basically the Jevity (liquid PEG feed) was not really agreeing with him. So tonight it's another battered sausage for tea! The only thing we have to keep an eye on is the fluids.
It's been quite busy in the house with Ann, the play therapist visiting (and getting soundly beaten at Uno), the tutor (who watched some DVD with him), and Jane, as well as a few others. I was buried away in some urgent marking most of the day.
We've been taking quite a few calls and messages following the update I posted on Saturday night. Thank you for all the interest and concern!
Thankfully the pain has been kept at bay so that he's not needed any more breakthrough pain relief and we have plenty in stock in case it does come back. There will be another 2 days of this dose of steroids and then he'll have to be brought down off them in steps again. So he's thinking positively about going to 'Hanes' (History) on Wednesday and even the LATCH Brain Tumour Support Group meet on Saturday afternoon.

Oramorph

After 6 melts in succession were not really quashing the pain, we contacted the nurse on call who came back with switching to 30mg of oramorph and increasing the fentanyl patch to 125mcg. Oramorph is no stronger than the melts necessarily but acts in a different way, in case the melts are no longer effective.
After the oramorph wasn't effective either an hour later, another call to the nurse allowed giving another 30mg. That only lasted a short while and so another 60mg was given. By 7.30pm he was ready to eat his battered sausage.
We're slightly nervous about the night. The registrar is suggesting boosting his dex for three days. If we have to give continued oramorph overnight we will be getting back to the nurse as they can call on an emergency pharmacist to make up a syringe driver with diamorphine. Hopefully that won't be necessary. Please pray.
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Ash alone to Inverness

I'm sorry not to post more often - it's the usual thing of finding the time and the words. In the gap since the last one Asher's been to Inverness and back on his own.
It started as an idea to boost Matthew's birthday celebrations but we were getting frustrated in the planning because Asher's only 12 and so can't fly on his own and the coach will not take anyone under 14 on their own. There are no such restrictions on train travel. He was very keen, with the condition that we would try and minimise changes. Plan A was to take him to Bristol Parkway so that would mean just one change in Edinburgh. But the sat nav led them to the middle of a housing estate 5 minutes short of their deadline so he missed the train. The station staff were very helpful but now he was faced with 3 changes! The journey started with having to stand all the way to Birmingham and then, in a mistake about the 24hour clock he got up too early and lost his seat. Then the train from Carlisle was 20 minutes late and he missed his connection. leading to a 90 minute pause at Edinburgh. One of the trip's highlights was when a station café waiter took pity and got him a hot chocolate 'on the house'. His normally abrupt text message style changed somewhat went he finally arrived at Inverness at 11:30pm, 'I am drained of all energy' he said.
It was not as if this was his first long trip on a train without his parents. He's traveled with big sis previously from Cromer to Cardiff, for example. But being alone is quite different. Thankfully the return journey went very smoothly. He's clearly enjoyed being away and being back with us. This morning he was helping put Pads' dosette box together for the week. Pads has had quite a lot of breakthrough pain (usually requiring 4 400 mg fentanyl melts per day) and the nights are disturbed by trips to the loo which we have to supervise closely. The consultant has mentioned a syringe driver previously and we may well be nearing the time for that. We are so grateful for a period of holidays when the pressures of school runs and maintaining full attention on (my) work can lift for a while. After a disturbed night, being able to lie in a while does make a huge difference.
The photo is a section of a letter which the SENCO organised to alert Parents of Pads' close circle of friends to a change in his condition and steps that the school were taking to safeguard the well-being of all involved. We're really impressed at the way Glan Taf are dealing with all of this. 

Pads has not really got downstairs very much this last week. He was able to go to the hot-tub on Thursday and popped down for a family film last night. We're trying to avoid placing expectations on him as he's always been one for trying his best to please his parents but that is getting increasingly hard as things progress.
I was trying to explain how we cope to a nurse the other day. Often it is easier to pass it off as, 'Oh well, everyone has hard things to deal with', when people ask, especially if there's not much time or the person does not seem to have sympathy with the real answer. In fact, as Mr Higham has said in this remarkable hymn, 'Deep in my heart there is a sigh' (full version on the WV Higham Trust Website):

There is a fellowship of pain
Deep in Thy heart of love,
O suffering sweet, eternal gain,
The tears of heaven above.
O grant me, Lord, to feel this joy,
These tremors of Thy grace;
Engraved by Thee, none can destroy
The riches I embrace.

This is especially poignant at Easter, when we remember the sufferings of our Lord Jesus Christ, the Lamb of God. His passion was abjectly abysmal, yet it opened heaven to sinners. The usual thing is to shun pain and death as only bad. The media regularly treats death as the worst possible outcome. Yet these things are the path of blessing for Christians. We prove that God's grace is sufficient: "for my strength is made perfect in weakness." Paul even says,  "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2 Corinthians 12:9) And in another place, Paul's great ambition was: “That I may know Him, and the power of His resurrection, and the fellowship of His sufferings, being made conformable unto His death.” Philippians 3:10

Wood Sculpture with Pod

Having had another disturbed night, we decided to cancel the tutor yesterday, especially because Pod was coming. They enjoyed making this garden sculpture. Then Pads was back up to bed and asleep in a short while.
Although he's been getting breakthrough pain every 12 hours or so, the medical team have given him double strength fentanyl melts (400ug) rather than increase his patch just yet.
It was as well that Pod came yesterday as we had 3 inches of snow by the time I was walking in to work at 8:30am.

Party

Am happy to report that the party went off well on Saturday. Risking a serious bout of déjà vu, it was 10 pin bowling with four of his friends, one of whom came last. Then we toddled over the Nando's for a slap-up meal. We're grateful for the support of Dreams and Wishes to put this party on. The only sad thing was that Asher was unable to come because of the cold he's still languishing under. Bo's also missed school today. They've both had spiking temperatures up to 39°C but paracetamol/brufen is keeping a lid on it.
Padi specialises in the 'rebound' bowling technique...

Pads' fentanyl dose is up at 62 micrograms now (just replaced the patches) and that seems to be holding the pain at bay. He can have further fentanyl orally, for breakthrough pain, which works really well, but he's not needed one of those for a few days.

Pod's Christmas visit

So Pads is operating on 50 microgrammes of fentanyl now. He still had some pain this morning but it calmed down and he still made it to school and a good session with the tutor.
I forgot to mention that Pod Clare was back last week, thanks to LATCH funding. This time it was with a beach-comber art Christmas theme. Here's a sample of what they got up to.

 LATCH have also sent us a small cheque for 'Christmas expenses' which is great!

Up a notch

After a week of Pads repeatedly asking for pain killers, we called the medical team yesterday evening and agreed to add another 12 microgram patch to the dose of fentanyl as the pain was starting to become a worry.

Some of the sunrises this autumn have been stunning but nothing is happening like that this morning... too overcast.

But lo! there breaks a yet more glorious day;
the saints triumphant rise in bright array;
the King of glory passes on his way.
Alleluia, Alleluia!

From earth's wide bounds, from ocean's farthest coast,
through gates of pearl streams in the countless host,
and singing to Father, Son and Holy Ghost:
Alleluia, Alleluia!

William Walsham How, 1864

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'

Pain returns

Pads is getting pain this morning above his left eye which is registering about a 6 or 7 out of ten - the highest it has been for a long time. When shining a torch into his eye, the pupil shrinks and then widens again. He's also getting a fuzziness in a patch in his right eye.
Yesterday he could be found reading his inscribed edition of 'John Knox' by John J Murray. He says the print is a good size. This is the first book he's tried to read in ages.
LATCH had organised a trip to the St Fagans Open Air Theatre today, they were doing Pinnochio. Pads preferred to play Risk later with his cousin, but that is now looking unlikely. He was more positive yesterday about the prospect of attending a 'theatrical makeup' course in the near furture, again organised and paid for by LATCH.