These last couple of weeks have been both incredibly difficult and awesome for us! The best bit is that Harry is now NED (no evidence of disease)!!

Harry continues to go to Barcelona and back home every week and has now had all of his medical assessments again, in preparation for the next stage of immunotherapy, starting next week.

He had an MRI scan and full body MIBG scan where he has a radioactive iodine injected into his body, numerous blood tests, and a bone marrow operation under general anaesthetic where they take 4 tiny pieces of his bone marrow from his hips, front and back. I have now lost count of how many assessments he has had. Alongside this he has had to have regular injections to boost his white blood cells following the treatment before, and continues to take other medications every day.

Harry has also managed to make it into school for a few hours on some days, which has been really good for him to see his friends, but most importantly he has had time at home with me, Oscar and Cookie and of course at his Dad’s too.

We hit a milestone last week, which is why things have been difficult too. Amongst the scans and travelling to and fro, and trying to maintain life at home at the same time, it was also a year ago that Harry relapsed to the CNS which was discovered after a swimming lesson. Whilst we are obviously over the moon that he is doing so well, it has really hit hard; this time last year we were told that the tumour in Harry’s brain was likely to return, and I honestly didn’t know if Harry would make it this far. This is why we are so grateful to Harry’s doctors here in the UK and to those in Barcelona too, but also to you all for helping us get Harry the treatment which has given him so much more of a chance in life that he absolutely deserves. It’s sadly not over yet, we still have lots of treatment ahead, some of which we know will be tough, but Harry is in a good place right now and VERY excited about Christmas at home!

Thank you as always,

Nina x