As you might be aware from chatting with us and some of the earlier posts Rhys is a fairly rare character as far as his consultant in Bristol is concerned.
He is on his third batch of treatment for his A.L.L. OK there are others who have had to have multiple batches of treatment so this he’s not rare in that respect.
He has had total body radiotherapy this time around as well as having cranial radiotherapy during the second round of treatment. Again the protocol for relapse treatment calls for cranial radiotherapy in some cases and total body irradiation is part of getting ready for a transplant.
He has neurofibromatosis. This is what makes him a rare case as there are not many cases of this that crop up in the UK or worldwide and in Bristol’s experience he’s it.
But he’s not satisfied with that apparently. No sirry Bob.
As you know Rhys hasn’t been 100% over the last couple of weeks.
First he had a CT scan which showed that he had a fungal infection.
Then he had a camera down his throat and some other tests which revealed that he had mild graft versus host disease.
Now it appears that he has an infection in his Hickman line.
The doctor looking after him said that one or two infections is normal but three, not normal.
Typical of Rhys, can’t do anything the easy simple way. Has to do it the awkward way.
At least they are treating the infections so hopefully we’ll have these licked soon so that he’s able to eat those bacon sarnies soon.
Hi Rhys, it was so lovely to see your mum – just a shame we couldn’t see you as well, Robert gets so excited when he sees you on the webcam.
Hope you like your teddy Robert picked for you. Did you hear about him dipping his wotsit in your mum’s wine? I think the whole pub heard your mum laughing, it was really funny! Abigail and Robert send you a big cuddle, and so do Shaun and I xxxx
Comment by Karen — June 18, 2008 @ 9:40 pm