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.

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!

New in from Pod&Pad

When it was suggested originally that he might like to get some quality time in with Pod, Pads did not seem that keen, he was worried about 'more mosaics'. Well he seems to have put that one firmly to bed. This latest effort is an African mask, brought over to us today by Kay of LATCH. Stunning!

Pad and Pod's Hands tapestry

Pod Clare was over again yesterday (13/9/2012). We had instructions to get some jazzy material and draw around our hand: these the raw materials for Pad and Pod's latest creation. www.podclare.co.uk
Each of the hands is given a colour theme. For instance, mine is slightly colour-blind. Boaz's is stark, like his brown eyes... I'll leave you to work out the rest ;)
Pads has just one more visit left after this, all sponsored by LATCH

Pads has been enjoying a less mobile existence since the holidays ended. It's not always easy to work out what's for the best in terms of activity and encouraging him to engage in it.

Recent photos

Limited edition T's and dog, originally uploaded by agent_mikejohnson.

Early in July, Pod returned to work with Pads on a T-shirt version of the doggy pyrography picture they'd done before. This was intended as a pressie for Ruth's birthday. Here are the four, including reluctant dog. This link takes you to a picture of Pad and Pod at work.

Also, since Bluebells were asking for photos of the recent visit, I collected the best we had into this set in Flickr. And a couple more from the RIAT trip. 

Pads is feeling a lot better than last Friday. He made it out to the morning and evening services on Sunday, which is the first time since anyone can remember.

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.

Pads and Pod

It was great to speak with our nurse this morning about all kinds of issues concerning Pads' care. We talked through some options for 'learning' which P has recently shown an interest in. The idea is a bit formative at the moment, but we really want to enable him to reach his potential without our inhibitions or expectations limiting what he attempts. This afternoon was given over to art with Pod. She'd helped the Brain Tumour Support Group create a mosaic and Kay (LATCH social worker) had the idea of funding her to spend individual time with Pads. On her first visit, after they'd working up some ideas, out came the paint. The name Jackson Pollock had been mentioned so I had visions of a new-style and far more colourful garden, but the process was a lot more sedate than that. Nevertheless, Pads was really pleased with the whole experience and rightly delighted with the result.

Here's the finished article:

We're pleased that the PSP-Go went for the respectable sum of £53.23 - thanks to Catherine and Malcolm for organising that for us. That money goes straight to the 'Kids Cancer Charity'.

Kay's Day

We're just delighted that Kay Richmond got to carry the Torch today. Sorry Matt (Smith), you're just an actor. Kay's the real deal (can just about be seen in the photo below on the far left). On Thursday, she visited us again, bringing a photo of the last Brain Tumour Support Group trip to the Botanic Gardens AND Pads' mosaic that he created with the help of 'Pod' Clare. Kay confirmed that she's secured funding from LATCH to pay 'Pod' Clare's expenses to visit Cardiff and do some further work with Pads. Kay had also got her husband to grout the mosaic for Pads!

We're enjoying the fine weather and a positivity that's 'in the air' these last couple of weeks. Yesterday Ally had a meeting with the consultant who warned against getting carried away. With Pads almost fainting in the hot tub on Thursday, we get these little reminders which help to keep our feet on the ground.
Many have prayed for complete healing for Pads, and still do. But there's something more amazing than miracles: glorifying God in the midst of 'dark events'. We're very mindful of a dear friend Lynn, who has languishing under illness with the most incredible joy and peace in believing. We had a beautiful quote given to us the other day from Spurgeon's sermon on 'Grieving the Holy Spirit':

Remember how much he loves us when he helpeth our infirmities. Nay, not only doth he help our infirmities, but when we know not what to pray for as we ought he teacheth us how to pray, and when "we ourselves groan within ourselves," then the Spirit himself maketh intersession for us with groanings which cannot be uttered—groans as we should groan, but more audibly, so that our prayer, which else would have been silent, reaches the ears of Christ, and is then presented before his Father's face. To help our infirmities is a mighty instance of love. When God overcomes infirmity altogether, or removes it, there is something very noble, and grand, and sublime in the deed; when he permits the infirmity to remain and yet works with the infirmity, this is tender compassion indeed. When the Saviour heals the lame man you see his Godhead, but when he walketh with the lame man, limping though his gait may be; when he sitteth with the beggar, when he talketh with the publican, when he carryeth the babe in his bosom, then this helping of infirmities is a manifestation of love almost unequalled. Save Christ's bearing our infirmities upon the tree and our sins in his own body, I know of no greater or more tender instance of divine love than when it is written, "Likewise the Spirit also helpeth our infirmities (Rom8:26)."

Cold feet

Last Friday we'd lined up an appointment with the consultant to review Pads' chemo as he'd indicated that he'd like to. About an hour before the departure time he was ill and this, together with getting 'cold feet', meant that he was not going to budge. Anyway, apparently he'd changed his mind a couple of days before and so the meeting wasnt really necessary. He offered the consultant to visit him instead, if she wanted to. This was another unexpected 'turn of events'.
He really is not getting out of bed much, couldnt even manage church on Sunday night. But he's still intending to go on the Brain Tumour Support Group trip to the National Botanic Gardens near Carmarthen a week on Saturday. Trip to include creating a large mosaic under the supervision of 'Pod Clare'. The remarkable thing about this is that this means he'll be out all day with a 9:30am start!