Into December

Into December we go... just a couple of weeks to Pads' birthday. We're often asked what he might like, but what do you get for the boy who has everything and wants for nothing? You cant even get him 'consumables' as he's eating almost nothing, certainly nothing sweet. This photo was taken at a pretty lavish get-together at a friends' house last Saturday - note the bare cream-cracker (and splendid tree!).

But his health continues pretty good. He's avoided a couple of nasty colds that the others have brought home and there's been no dramatic further loss of faculties. It seems like the temozolomide is holding the cancer's progress. The consultant wouldnt be drawn on whether the clomipramine was also helping. I started working from home more in November, at the suggestion of the consultant, going in to the office for meetings and etc. Thankfully it's just a 10 minute walk over the park. It is hard to know whether to continue that policy and for how long. I'm grateful that my bosses, well, everyone really, is extremely supportive. It's tempting to think ahead, as to whether I will still be 'working from home except meetings' in a couple of months time, but we just have to take each day as it comes. I bumped into Dan, the social worker from LATCH, in early November. He was organising a Christmas night-out for the brain-tumour support group. I had to confess then that I could not imagine Pads would make it, but he's there right now 10-pin bowling!
Last week we finished our annual Christmas review for posting with a Christmas card to some friends who we know are unlikely to check this blog. You can download a tree-friendly version from this link.

Clomipramine and penacillin

We met our consultant yesterday and had a good chat about the situation. They explained why it had taken a while to get the green light to start clomipramine: it was a case of getting answers to all the relevant questions. So he began taking 25mg last night working up to 75mg over a period of three weeks. He was already taking amitriptyline for it's pain reducing benefits but that has to be reduced as it's in the same family as clomipramine. We were also advised to start the antibiotics because this cough is not getting any better. He is amazing at taking tablets! Usually they just go down in one gulp!

Moli to race Holly

It's a bit of a dream opportunity for her, but Moli (and her mum) is booked to crew for her Grandad aboard Holly for a race on the 24th September, the St Wilfrid’s Hospice Coastal Yacht Challenge. We're aware that we've done a lot of sponsored things this year, but even if you have just a pound to spare, it would great to help her meet the modest £100 target. The Justgiving page is at http://www.justgiving.com/moli-n-holly/ Thank you!

This video was taken on another trip just over two years ago.
In other news, our consultant agreed to meet up with us tomorrow about the clomipramine, so we're inching forward with that. Pads is coughing a lot and it's giving him pain in his back, but he's bearing up well. Yesterday we had him checked out with the GP who was certain there was no infection. I took a prescription for antibiotics in case the cold turns nasty on the weekend but hopefully he won't need it. Today he had a visit from the tutor and went out the chiropractor in the afternoon.

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. :-)

Clinic day

Ally pushed Pads over to the hospital in his new, ample wheelchair. He was pretty jovial. With a twinkle in his eye he asked 'what if I do not want to have the MRI scan' which is proposed for 3-4 weeks time. The consultant patiently explained that it would be useful to get a clearer view of what was going on, but that she would explore how it could be kept to as short a duration as possible. She tested his neurological system by asking him to touch each finger with his thumb in order, push with his feet in different directions and follow a finger with his eyes. In spite of everything, she seemed to be quite pleased with his responses. Belying the significant deterioration in his motor skills, he's still managed to build this Ferris wheel from a KNEX kit!

Pads starts a new cycle of temozolomide next week. It's impossible to say whether it is doing any good at the moment. A friend of Ally's mentioned a recent BBC Radio 4 programme which explored a drug called clomipramine that selectively kills certain types of brain tumour cells. Substantial trials had not been undertaken because it is an old drug, used to treat depression, and drug companies who fund so much research have nothing to gain from investing in trials. See this CancerActive page for more information.
Ally handed a copy of a web-page about clomipramine to the consultant and she didn't seem to have heard anything about it. She promised to investigate it next week.