Photobook arrives

Pads was quite splat again yesterday, after the successful trip to Iron Man 3 on Tuesday night. The mission was complex, edgy, and fairly tense on times, the hero was 'armed and dangerous', and all was well in the end; a bit like the film's plot! Because of traffic we arrived with just enough time but, in haste, I forgot to put up the disabled badge and duly received a parking ticket. I've lodged an appeal.
He was just coming around when Mr Higham and our Pastor arrived so he was glad of their ministry. One of the other things that helped lift Padi yesterday was a parcel from Ellen MacArthur. Of course we'd told them that he was sadly unable to take his 3rd trip this summer. They said they would send a hoodie, which sounded nice. It arrived yesterday embossed with his name.

Even better than that though was a photobook crammed with pictures of his trips. Most of the photos are new to us and brought back a lot of very happy memories for Pads. It provided a great talking point with Grandad and Grandma, also visiting yesterday, Peter being such a keen sailor (see his weather Webpage).

We're glad that Padi is so much more comfortable this week since the syringe driver went up, as much as we may have been dreading that. He's been out of the house, even had a bath with it still functioning and so if he does want to do more he knows he needn't be limited by the driver.

Meals and visits

Pads didnt make it out to church at all again on Sunday so it was great to see Pastor David and Ruth Kay yesterday. They were up visiting  from Whiddon Valley, Barnstaple for the Christian Worship Committee (get your CW Camp form in now!) and caught Pads downstairs - a rare sight! He'd been watching 'Band of Brothers' with the tutor. They had a lovely time together.

The day didn't stop there: we also had a visit then from the gastrostomy nurse who changed Pads' mickey button as we had reason to believe it was faulty. Padi was brilliantly calm for this, considering how strange it is and how distressed he was the first time this had to be done. 

The nights have not been too bad since last Friday. We have needed to give a few doses of breakthrough pain relief today though. Asher donated his handwarmers which provide a level of relief too when applied to Pads neck. 

We've been grateful to receive several delicious evening meals from friends at church which eases the burden, particularly on Ally. I've also obtained a two week 'fit note' which means that I can work from home without feeling obliged to go in to the office and I can fit work around events at home. There's plenty going on! Ally's currently preparing the back room for Pads. It is larger and will make looking after him a lot easier, as much as he likes his corner of the study!

People often ask, 'how are the others?', and I've been reluctant to give an answer because I'm not very confident they would share fully with me as a parent. This means creating appropriate space for them to express themselves and we've been taking advantage of the professional help available. The boys are looking forward to another 'Over-the-Wall Siblings Camp' in half term and that is very much geared up to supporting children in their situation. 

Sadly, it looks like Pads is not going to be well enough to go to Ellen MacArthur this year. When we told them he won't be able to come they said they'd send him a memento to show him that they are all thinking about him. 

Time passes

What a strange thing time is. Whether you're counting billions of years or the eternal ages that follow after the blip that is our existence in this life. Last summer was supposed to be Pads swansong, with trips all over the country, including Ellen MacArthur. Now he's been a second time! In conversation about this year's sailing, Ally said that if he wants to go again he it would be different: he was something of an old hand, and Ellen MacArthur do another level of sailing for the more experienced crew. Of course that would be for next year. NEXT year...
This is so far into the future! But thinking about the future is something that challenges all of us in various ways, at different stages of life. Pads has been worrying that, if he lives, he won't be able to get a job or be much use because he's so far behind with his schooling. I just tried to reassure him that he's already more literate than many people, and that many jobs do not require an advanced academic education. Of far more consequence and comfort are verses I hung onto when I was his age:
"Seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you." Matthew 6:33

More on the Ellen MacArthur Trip

Here are a couple of favourite photos you may have missed if you have not looked through the Ellen MacArthur Cancer Trust facebook album. I could not resist copying them to add to this post...

It was terrific to give hospitality to Rev. John J Murray and his wife Cynthia last night. They also lost their daughter to a brain tumour when she was 12. His booklet, 'Behind a frowning providence' is an excellent read for people in our situation.
Pads was pleased to come out to the Summer Conference first meeting last night where Jonathan Munday declared plainly that we are sinners and need to be saved sinners, as Rahab the harlot was. Boaz came away saying that his mum was Rahab! The biblical Boaz (the person, not the temple pillar) parents were 'Salmon and Rahab', which must have meant that Salmon was fine about marrying an 'ex-harlot'. There you have a case of the full restoration that any sinner can know through the amazing salvation offered through the Lord Jesus Christ. But even that restoration will pale in the light of the 'eternal weight of glory' soon to engulf us, and which the 'sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us' (Romans 8:18).
In spite of being at the conference last night, Pads still spent ages afterwards writing up his evaluation form from the sailing trip. Here are a couple of quotes:
Most enjoyable parts of the trip? "Getting there and making new friends (and meeting old ones) Driving the boat and beating my record and catching 3 crabs!"
What did you enjoy about the sailing? "I enjoyed just having the wind in my face, and overtaking the Scarlet after leaving an hour behind."
What did you particularly enjoy during the week? "Just getting your hands dirty and doing what was 'normal', and talking to people in the same situation as yourself"
Any comments for staff/volunteers? "It was great to have them there, solely for your pleasure or need, if anybody helped me enjoy my time there it was the helping hand offered in them"
And, finally:

"It was fab to be with people 'in the same boat as you'. I mean, you almost felt; "if these people are going to make it through, I will"

He was fairly blown away with how nice everyone was. We are so grateful to everyone who was involved. We had our hearts in our mouths a bit wondering if it could possibly as good a time as last year. Dan said Pads actually did more this year than last! He's still chuckling over the photos in the facebook album. There's one where two girls are trying to move an 'AfterEight' from their forehead to their mouth without touching it. Involves a lot of facial contortions! Look out CWCampers - you are next! I'm in charge of the 'Mini-Olympics', so, if you have a favourite 'crazy competition', I'd love to hear about it ;)

Aboard again

Although the weather has been wet here in Cardiff, the Solent has even had some sun for Pads' second trip with the Ellen MacArthur Cancer Trust. He was very excited on Monday, but not so much that he was able to make the 8:30am departure time: mum kindly drove him down to Red Funnel... with 7 minutes to spare. Actually they could have just popped onto the next Sea Cat. Thankfully we've not heard much from the team except a couple of reassuring text messages from Dan, the LATCH social worker who's gone down pretty much to care for Pads, as he did the last time.
Photos of the trip can be viewed on the '2012 16-19 July 8-17 year olds Trip 2' album on the Ellen MacArthur Cancer Trust Facebook Page.

Warning - not for the sqeamish

Pads had great fun today with his Brain Tumour Support Group chums. They're a really caring group and love to have Padi along. The group gives him a completely different circle of people to be with, whatever they actually get up with, he really enjoys being there.
The idea for visiting 'The Theatrical Makeup' studio emerged after the road-show version were engaged for the LATCH party in January. Pads was not in very good form that day. This time was also better because it was a dedicated workshop with friends. Initially we were concerned because the start time was rather early, 10am, and, while we were late arriving, it was only by 10 minutes.
The next time I saw him at 2pm he was wearing two very gory wounds. Apparently they'd been inflicting these on each other for most of the time I was away! Bearing in mind yesterday's symptoms I left a few paracetamol with the LATCH social workers, Dan and Kaye (big thanks to them!), but he's had no extra pain all day. It is strange how hot he feels sometimes... warm enough this morning to appear downstairs in shorts. This was just as well because it meant he could get a really juicy wound on his shin.
He wasn't long home before heading off to see cousin Llŷr. He was still going strong until after his bath (leaving his fentynal patches on in a warm bath can speed up the drug's release!). It'll be interesting to see what effect all this activity has on him tomorrow.
In other news, Dan says he's had the 'OK' to go on an Ellen MacArthur cruise this summer.

Putting the calendar to work

It being half term, yesterday, Pads took a trip to visit Dan, one of his old school pals. He was out for 7 hours, including a trip to the dentist and McDonalds for a donut.
I was looking around Pads room on Monday morning and noticed his certificate from the Ellen MacArthur trip last year. When I suggested he might like to go again, this was recieved with considerable enthusiasm. Then I thought, we should be using that calendar. A while ago, our nurse mentioned the word 'June'. That came as a bit of a shock, to even think that far ahead, but it occurred to us that living for the moment can wear a bit thin. Pads has a couple of dates coming up with the Brain Tumour Support Group and so I've penned these onto his Chick-fil-a calendar. This is positioned right in front of him and now displays some things worth looking forward to.
The dates in the picture are for sticky toffee pudding, which Ally's planning to make for a meet-up tomorrow night... also on Pads calendar, although he's unlikely to eat any of it.

The EMC trip

Pads is still wearing his Ellen MacArthur tee-shirt. He had a really great time, we are so glad he was able to go and to stay. He was surprised at how nice all the people were and is in contact with one of the 'crew' via facebook. We're a bit slim on photos because Pads was nervous about using his digital camera and he lost the single-use film camera he was given. Anyway, we're told that some photos are likely to appear on the charity's facebook page. Until then, if you want to see the kind of thing they get up to and the yachts they use, have a look at: http://www.facebook.com/EllenMacArthurCancerTrust
Pads had the ample fore-peak cabin to himself which meant he could go and have a rest at any time. He was surprised at how much strength he had and he never needed to resort to that. In fact he only once needed additional pain relief, two paracetamol, in addition to the fentanyl patch. He went to bed early at 7pm the Monday night but was unable to sleep: the others were crabbing and he caught a huge single-clawed one.
They were blessed with fair weather. Pads was steering when they were in full sail hitting almost 9 knots. At Yarmoth they went ashore for donuts at the Royal Solent Yacht Club and a game of rounders nearby. They sailed on within sight of the Needles before turning back.
It was very memorable when the group were recalling their funniest moments of the trip. Dan had remarked how he thought the cabin bunks made the space like a grotto, and Pads chimed in that Santa is not bald and does not have a red beard. As the laughter was peaking, Dame Ellen, plus her (really nice) border collie called Norman, sneaked in and sat next to Pads. He was impressed at how 'normal' she was and remembered to bag an autograph for Rhys. Although he left that behind, thankfully the team sent it and his certificate on in the post.
Back home, Pads is back on the codebreakers and enjoying playing with the dogs Jack and Moses.

In good hands

This is Dan. The latest report from him is that Pads is fine, went to bed early and then got up again to play Uno. It was all about orientation today, but they did manage to fit some crabbing in: Paddy's crab catching and handling skills are somewhat legendry in their own way...
Sent from my BlackBerry® wireless device

EMC trip

Pads has been really looking forward to the Ellen MacArthur trip.
http://www.ellenmacarthurtrust.org
The picture is him wearing his new deck shoes, plus Uncle Rhys (not really sleeping :)
Note also the dish of snack eggs!
I am slightly astonished that he's gone, seeing as how he seemed to be taking a real 'tail-spin' a few weeks ago. But he's determined to go, and, as he showed on the trip to Heatherton, he can put on a spurt when the conditions are right. Plus the consultant is boosting his cortisol dose to zip him up a bit.
We figured 8.30am to join a coach from Cardiff would be too early for him. So he and Mum set off this afternoon for Spring Road Evangelical Church, Southampton. From there they'll stay in Titchfield overnight - the trip presented a great opportunity to visit Uncle David and Auntie Susan. Then Pads is due to spend 4 nights on board. Ally had quite a job to get all his medication ready. Apart from one of the LATCH social workers who knows Pads well, each boat has a Dr aboard. There will also be a couple of other children going who Pads knows. They all sleep on the boat so Pads can rise whenever he wants and the team are pretty confident they can accommodate his needs.