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. :-)
