So, back into the Haematology Unit for cross-matching of blood before Kai's second blood transfusion. Consultant Lisa and specialist nurse Polly took us into a private room (reassuring us it was just for privacy and nothing scary) for a chat...
Upshot is, they've been trying to find the perfect bone marrow donor for Kai and so far haven't found one (though I understand they'll keep looking) so, since his white blood count is going down and we therefore have to assume he's very unlikely to get better on his own, in a couple of weeks he'll be going in for the immuno-suppression treatment, which will involve him staying in for a week while they administer the meds intravenously and remaining in for at least another week - and probably more like a month - while he gets over it.
This will cure the condition in two-thirds of cases, and he can still have a bone marrow transplant afterwards if need be. If it doesn't work, they try again. Consultant James is still very reassuring about the whole thing.
We're still waiting for the final results, to confirm it's not congenital and it is aplastic anaemia and not the other version which has a different name and needs slightly different treatment.
He goes in again on Sunday for a second blood transfusion (which he's looking forward to as the last one made him feel better but didn't last long and now he's exhausted all the time again). At the same time they'll do the usual checks so we don't have to go back in again on Monday, and give us the anti-bios he needs to take from now on (different ones than before, these will protect against some nasties that live in the environment and that people with normal immune systems can carry without being aware of it, that can cause serious infections. They seem to be particularly worried about chest infections.)
Ever felt like you're stuck in a nightmare and just want to wake up but can't? Yeah.
However, our own doctor, who is keeping tabs on things, has said he can go there for his weekly blood tests, which will mean a £1.80 return ticket on the bus (which is nearly always almost empty) instead of the £10+ each way taxi fare to the BRI, and a much less stressful (and shorter) trip. They may even be prepared to come to us for his bloods if we ask, but I think, as long as we're careful and he wears the mask he's been given for emergencies, getting out of the house even for just a little while to somewhere familiar will do him good. First one is next Wednesday.
On Friday of next week he goes back in for another bone marrow biopsy (from the other side) just to check how things stand - then the week after they'll finally decide when they're going to start the treatment.
Gleaning what little good we can from the whole bloody awful situation, his new laptop has arrived (and wow is it a beauty!) and they have wifi on the wards, so I'll be able to skype him from home - like we do now - and he will be able to stay in touch with his friends world-wide the same way. And Polly arranged for the Macmillan rep at the Citizen's Advice Bureau to ring me urgently for initial advice while Kai was having his usual tests, and on getting home we rang the DWP and got him 'signed up' for Employment Support Allowance (well, we will have when the forms arrive and are sent back, anyway) which will at least help a little with the financial situation. They'll ring me later to arrange an interview for me to get more info, although they were able to tell me that the new version of the Disability Living Allowance wouldn't come into effect for three months after the initial diagnosis and any carer's allowance is dependent on that. Frankly I don't think we stand a chance, after the fucking Tory butchering of the system. But we'll see.
I may be able to get the cost of the taxi fares back, though that's not definite.
So that's where we are. It's viciously unfair, but wishing it was me, not him, accomplishes nothing. But I tell you this, if I ever find out there is a (judeo-xian) god, I shall demand to see him, acknowledge him, then rip his balls off (man 'made in his image', remember?) and shove them so far down his throat he chokes on them before kicking the bastard into the next century.
Labels: angry, Kai, medical matters
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Joules *Dances with Haddock* Taylor
pontificated this at 11:59 pm
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