Lumbar Puncture

It has been really good to be at home for the past week. I have been back at work, which is nice, and Sally has been a hero dealing with the boys at home. Skye's Consultant took the decision to perform a Lumbar Puncture to assess the situation following Radiotherapy, which came as a bit of a surprise to us as we had thought that his next assessment was to take place in March following High Dose Chemo. Watching him lose consciousness as he goes under anaesthetic is something I don't think I will ever get used to. There is that momentary glance of anxiety on his face as the anaesthetic starts to kick in, and fractions of a second later, his body goes limp. It is horrible to watch. The result of the LP will guide Skye's treatment in the coming months. If the Spinal Fluid is clear, then we progress to High Dose Thiotepa with Stem Cell rescue, replacing his own stem cells which were harvested back in September. Our Consultant has very clearly labelled this as 'nasty'! The chemo will strip out all his bone marrow and leave him incredibly vulnerable to infection. During this period of this treatment he will be in isolation. This is due to begin on the 3rd February. If there is evidence of tumour cells in the SF, then there is a great deal of debate to be had. If he has not responded to the upfront chemo, and he has not responded to the Radiotherapy, (which is seen as the key part of the treatment) there is a question as to whether it is worth putting him through High Dose, and how much is to be gained by doing this. We have today, discussed the options of various clinical trials if this should come to pass. It is soul destroying to think that Skye is going to have to be 'broken down' yet again. He is gaining in confidence on a daily basis, and because he is walking around the house and able to climb the stairs, albeit on all fours, he feels that he is better. Getting through the RT was a major milestone for him and he was in the garden on Saturday, on the swing, expecting to be able to do the things he used to do. It is incredibly difficult managing his expectations in so many ways. He is still struggling to eat due to mouth ulcers and a very sore throat, but we have managed to progress from noodles to sticky rice! We have a trip to UCLH on Wednesday for a follow up appointment, which we are all looking forward to. And after that we will sit and anxiously await results, which we should have by the end of the week.