Well, finally I have a bit of time to update the blog. We've been so busy - both with Luke, and at work. I am having the tyres changed on my car right now, which means I have half an hour or so just to sit and relax!
Luke is doing well. The third round of chemo was meant to start last week. They did blood counts three times but his neutrophils kept getting lower. It seems Luke wants more than three weeks between rounds-which is fine by us. The first week or ten days after chemo he really struggled, and we know it will be hard for him after the next round, so a bit longer with him being happy and seemingly feeling good suits us fine.
We had an MRI a week ago, and the results are great. His tumour is already shrinking, and the doctors are really pleased. The plan from here on in is rounds three and four of chemo, which will take us up to Christmas, then another MRI. If things are progressing along the same lines they are now, then surgery will happen within a couple of weeks to cut out the rest of the tumour. Then, and this is the big news (along with the tumour shrinking) they want to send Luke to Florida for radiotherapy. Then there will be up to six months more chemo.
So, Florida. Apparently Luke needs proton radiotherapy. There is pretty much only one place with the right kit to do it on a spinal tumour, and that can do general anaesthetic on a baby. That is Florida. Somewhere between 3 and 8 weeks will be needed. Felt really odd hearing about this - very daunting, like when we were first told about needing Addenbrookes or Great Ormond Street. But, also feels really encouraging given at one point there was a risk treatment wasn't even worth trying. We don't have many deatils yet about the trip, suffice to say there is a lot to do beforehand, and a lot of arrangements to be made by Addenbrookes before we know enough to sort ourselves out. But, we are feeling pretty positive about the whole thing right now. Relief!