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

Low blood pressure

Pads has never had high blood pressure. Last week an attempt was made to measure it but the machine that was brought to the house appeared to be malfunctioning - twice. Over at the hospital they've got a better machine and his score was 74 over 42. Let's just say it's no surprise he gets dizzy. Then mum brought up hydrocortisone with the consultant last week and the endocrine team decided that his dose should be upped from 15mg to 20mg.
The palliative team were over today in fact, because of some concerns we'd raised. Certain symptoms were suggesting cord compression and this would require emergency radiotherapy. Thankfully the symptoms were thought to be from other causes. The team confirmed that the breakthrough pain fentanyl melts should only go in one at a time, rather than two. That was ok back when he was on the 200mg melts. Multiplying 400mg clearly has a bigger payload! At times he was made fairly drunk by this on the weekend. It's probably just as well we had been sent the melts Pads thinks taste disgusting. The patch is going up to 100mg with effect from tonight.
He's looking serene in bed now, having earlier enjoyed Skyfall with the tutor and put away a bar of Dairy Milk and plenty of popcorn.

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'

Thanks again LATCH!

Thankfully Pads has not got any pain today. He's got visits from the psychologist and tutor lined up. New fentanyl patches and a couple of paracetamol did the job for him last night - he popped 9 pills all in one gulp! He's had little bouts of pain in the past and probably this is just of the same order. I was helped this morning reading four simple powerful words: 

'Fear not: believe only' (Luke 8:50)

As we turn the calendar to July he's got plenty in prospect: another visit from Pod, re-visit to Bluebells, Ellen MacArthur trip, and the Summer Conference (hope you can come?). And then there's the Olympics. A long time ago this came up when we were thinking of an end of treatment charity funded 'dream'. Pads had said he'd like to go to 'the Olympics' but this seemed a long and uncertain way off. We had a fantastic trip to Florida instead. The last time the Olympics were on we were moving through France with Padi's mystery illness happening. Everyone was fascinated by the coverage we picked up in the 'Formule1' motel, even though it focussed on the French interest. I mentioned this to Kay. She's been raising money for LATCH by accepting donations for the loan of her torch (picture below of Kay with a torch official when she did her 'carry' back in May). This makes a lot more sense than selling it on ebay as some have. Her torch has been a fantastic marketing tool, making appearances at schools, etc. with people paying to have their photo taken holding it. One Cardiff jeweller is renting it for their shop window while the Olympics are on. Anyway, Kay asked LATCH to fund a small grant to buy a new telly and the cheque arrived last week. Pads was mystified by this, 'but we've already got a telly', he said. In fact we don't even have a licence since we do not watch broadcast TV or live footage on the Web. So the plan is to get a licence for the Olympics only and that gratifies everyone's intentions.