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).

'Bad day at the office'

Although he missed history again on Wednesday, on Tuesday there was a test in Maths and the teacher had provided a version of it especially for P. When he looked at it he just drew a blank, not able to remember anything. He said it was humiliating. Perhaps his reasons for going to school have become more limited to the social event, rather than learning lots of tough examination prep. Mum mentioned that there are plenty of people in school who do not even know why they're there! I added that Maths is something that you have to keep on top of or it soon slips away. In any case, he's amazing. Many others would have given up, choosing to spend the rest of their time in bed. Not Padi.

Outlier

Pads is getting more confident about going into school. On Tuesday he did not want mum to even see him go in. The first word that he uses to describe it whenever I ask how it went is, 'Great!'. A few weeks ago he was waiting with a different friend than usual because the normal one was at Latin. When mum suggested this sounded rather clever, Pads mused that he would probably have been doing Latin as well but he 'did cancer instead', and proceed to 'laugh like a drain'! I think you had to 'be there'...

We've been focusing on BBC Children in Need over the last couple of days. Bo was singing in a thousand-strong children's choir at the Cardiff International Arena on Friday night. That evening's first Children in Need episode featured Padi's play therapist, Anne, from the Kids Cancer Charity. You can see a feature about one of the other children and the help she was at 47::40 on i-Player until next Friday. The feature quoted her time at £50 per hour and Pads has had very many of those over the last four years. Ally's met the mum of the little girl in the Children in Need feature at a 'pamper day' organised by LATCH.
Apart from the 'sufferers' support group Pads goes to, LATCH also organise 'Brain Tumour Support Group' meetings for the carers in the evenings every so often, these may feature talks by our consultants. The question and answer sessions at the end are an excellent forum for all in attendance, i.e. including whatever members of the multi-disciplinary care team that attend. Many carers were talking of their bad experiences with being brushed off by clinicians when trying to get a diagnosis, even when faced with far more obvious symptoms than Pads presented. The basic message is that probably you know your child better than any physician and you can get a sense when things are 'not right'. You also need to recognise when your reasons for suggesting the child gets a scan are unreasonably dismissed in spite of the status and position of the person getting in the way. Parents have even been referred for counseling because of their persistence. All the while, delay increases the risk that the pressure will cause 'brain herniation' or tumour metastasis (spread).
All that talk takes us right back to the start of Pads' illness. Our story is quite different these days. We now seem to be in the arena of 'long-term' side effects: our ears pricking up when the consultant mentioned radiotherapy-induced curvature of the spine. I couldnt recall hearing that one before but giving consent to something like radiotherapy can do funny things to your memory. After the talk, Ally asked the consultant straight, 'So is Padi an "outlier"?' (i.e. is the length of his survival rare). She confirmed that he is. We are all grateful for this of course, but there is no getting away from the fact that he is still ill. Today he did not emerge from his bed until 6pm, when the chip buyers returned with a small battered sausage for him. This he duly  devoured but it wasn't long before he was heading back up the stairs feeling dizzy and exhausted. 

Twice again

Following up Sunday's effort, Pads was back at school again this week, this time he attended twice, one hour of maths on Tuesday and one of history on Thursday. It was good. Pads doesnt have to walk too far. History is nearby and so is Maths. His welsh is not as hot as it used to be so that is an extra challenge but with concentration he can get pretty much all of it.
On Wednesday we celebrated Moli's 16th with a meal at an excellent little place called Troy. Pads had the 'wings' - it's pleasing that he wants to to join in enjoying the food at these get togethers.
Tomorrow he hopes to go to the Chippenham Conference on the minibus. Departure time is 9am and it's a full day so it'll be interesting to see what shape he's in by the end of it.

A day in bed

We had a call about the scan yesterday. The radiographer who always looks at Pads' scans said that there were no lumps and no big changes. We've lined up a meeting with the consultant on Friday and Pads wants to come too. Yesterday was pretty much a day in bed for him but his impending visit to school is certainly capturing his imagination. He was asking for equipment, like pens, and a school bag, the latter he'd donated to Asher last year.

Meet the senco

Pads scan result is still unconfirmed but we're not expecting any big surprises.

Today, after Ally had worked hard to get in touch with them, Pads went for a meeting with the school's Special Educational Needs Co-ordinator. She was very apologetic - it had been a manic start of term. What was so impressive was their willingness to facilitate whatever Pads was up for. Maths, history and possibly English, are on the menu. Initially this will mean an hour a week starting next Tuesday, rising to 3 hours a week when he's ready. Every effort was made to think of all the adaptations he might need, for example how far he can be expected to walk between classes since he's far from keen to use a wheelchair. 

Since one maths lesson is first thing, he would need to be able to catch up and so it's great he still keeps the tutor - that would only stop if he was doing more than 50%. 

I can't imagine what kind of effect he'll have on his peers, thinking back to the last time many of them will have seen him, April 2011! How the time slips by! And now Ally's online ordering him school uniform, shoes and all.

Back to School, or not

Asher and Bo returned to school on Tuesday. We're all very keen to find out how their new situations are treating them: particularly Asher, who started high-school at Glan Taf. The school bag he chose (Trespass Eldorado) is attracting some interest: a rucksac/carry-on suitcase cross, complete with wheels and extendable handle that some have laughed at. When they are being crippled by over-weight luggage he'll be able to wheel his along with ease. Things are a bit slow for him this week but we agree its good to settle in gently. He's in top set for everything so that should keep him out of trouble when things get going!
We're in a strange phase of this disease. The summer has ended and Pads cannot contemplate going to school, which is fair enough. Even quite mild events drain his stamina. Today he's recovering from a day of film. His cousin Llyr is shortly off to Birmingham having done stunningly well at his A'levels (AAB). So a Lord of the Rings cycle (3 films, 4 hours each) was organised for his mates and Pads got to tag along, so completing another item on his bucket list.
 
It was great to meet up with Kay, our LATCH social worker yesterday. She's going to write to our lender to see if they'll give us a payment holiday and LATCH will make a limited contribution towards utility bills. She is keen to organise further events for Pads, no matter how small (knowing him!), including venues for the family to go away together. But we're actually fairly 'tripped out' and the boys are enjoying school. Moli is somewhat dreading Year 10 though, which threatens an even bigger workload than previous years. Sadly, The Joshua Foundation flat in Fishguard that we'd enjoyed previously is permanently unavailable. Damp and rot has set in making it prohibitively expensive to put right. The property was gifted to TJF and so they are unable to sell either.
We're making progress investigating clomipramine, the drug I mentioned the other day after a friend mentioned a Radio 4 programme about it. After listening again closely for any names, I eventually found Ian Phillips on Twitter, who talks about how the drug appears to be helping him. He lives just down the road and is raising funds for the Samantha Dickinson Trust (link to his justgiving page). This charity has funded research into clomipramine and is pushing for proper clinical trials amongst brain tumour sufferers. Ian confirmed his consultant's name, whom Ally knows well from Velindre and who organised Pads' radiotherapy. I keep having visions of tumour cells dying in the petri-dish, as described on the Radio 4 programme. While there are any number of complicating factors, it seems worth a try. We hope Pads consultant can find a way of getting us there. One of the drugs he's on at the moment is from the same family as clomipramine but Pads is getting it for pain relief benefit. We have to be sure that the new drug will not interfere with the finely honed brew he's currently on - temozolamide, amitriptyline, phenobarbital, hydrocortisone, ondansetron, paracetamol and not forgetting the fentanyl patch and nightly feeds.
I hope this post goes somewhat towards pleasing those who would like me to write a bit more here. Blogging does punch quite a hole in ones day - just as well I'm still on 'fit note' leave for this one.
Clearly I can't write publically everything that happens. I have thought about setting up a subscription-only blog but its easier to just say if you want to know more, please get in touch. :-)

No PET

We left it in the hands of the experts to think whether or not a PET scan would help. Our consultant has been speaking with the staff who run the new installation in Cardiff but that doesnt have the optimum type of scan for medulloblastoma. So the team took it further, but, in discussions with UK experts, it was thought that even the best a PET scan could do may yet be quite inconclusive. The best kind of scan, it seems, is the MRI and for that we'll have to wait until after the holiday. The kids are getting very excited about that - counting the days... but there is a lot to organise and do before the trip so the parents are hoping it lives up to its codename: Operation XAL (pronounced exhale). Pads is getting over the worst of a cold which pole-axed him last weekend. He rallied and made it to three lessons on Wednesday, but the walking  around school exhausted him. Since swimming nearly a fortnight ago, he's come up with spots and, by now, quite nasty sores. It's either a skin infection or a reaction to chemicals in the water. Either way, it goes to show something of the lasting effects of the chemo/radiotherapy.

Nothing much as changed from the Multi-disciplinary team meeting on Monday last. Pads continues in good health - apart from a spotty rash that has not really left him since his dip in the pool last Saturday. He's maintaining his normal tuition times (5 hours) plus 3 days of school (7 lessons in total) which makes 12 out of 25 that students normally go to. He went to English and Science for the first time this week and enjoyed them well enough. On Tuesday he went  to school for 2 hours, did an hour with the tutor and then went to Holiday on Ice, got to bed at 11pm. Thanks to Hannah for taking them and this picture :-)

He was up again the next morning for three hours in school. Decided not to come and see the consultant with us in favour of beating the play therapist at various games-  2 hours of skipbo! That was with 50 cards each. She managed to win the shorter version with 10 cards). Of course, all these things are nicely smoothed along with the occasional cheeseburger.
On Thursday night he enjoyed a stage production of Pinnochio at the New Theatre too. Quite a social whirl!
He was more awake to the fact that we'd visited the consultant but we couldn't enlighten him any more because there was no material change in the advice. So we're still looking at another scan in a few weeks time to see whether anything has changed by then. Meantime, the holiday is getting nearer and there is plenty of talk about where to go, what to eat, etc., God willing.

Back to school

Pads has shaken off enough of his sinus problem to do some more hours of school. Yesterday he met the SEN co-ordinator and they got on really well. He's now equipped with a couple of cards to show people, one about his hat and the other in case he gets tired. He was back there again today for an enjoyable three hours(!), including IT and maths. There is quite a bit of vocabulary to catch up on...

Changing school

Pads did 2 hours with the tutor, even after the exciting trip to Glantaf. On the way there Pads said he felt a bit anxious but it was only because of the unknown. Our meeting was with two teachers who already knew Padrig from swimming lesson days. Mr Evans and Mrs Jones are legends in their own lifetime. It is hard to imagine two kinder individuals in the same room. They were an excellent balance of letting Pads set the pace while suggesting a way forward which was positive. He's still in touch with one or two pupils from primary school days so the teachers found the timetable which will allow Pads to slip in to any lesson he wants to, accompanied by his best friend. We just need to let the school know in advance so they can make the arrangements.
Pads' first 'lesson' is planned for Friday. He'll arrive after the lunch-break madness has calmed down and leave before the home-time stampede. This is all about easing him in as gently as possible. They were not concerned to even look at the previous reports we'd brought along - save that for the New Year. The teachers were at pains to encourage Pads to speak to them if he has any worries at all.
We had heard from friends how good Glantaf had been with their child after traumatic treatment and, so far, they've lived up to the talk.
Naturally it will be disappointing for his previous school and his big sister, but we're all intent on doing what's best for him. A large part of the struggle to get him up and out in the mornings to school has been the sheer distance he'd have to travel before lessons even started. Glantaf is only minutes away, making him far more accessible for rescue missions. I think he's quite looking forward to it.