Latest update: February 2018
He is now nearly four and has been off treatment since May 2016. He has five monthly cystoscopies and biopsies taken if needed at Great Ormond Street and four monthly MRIs at The Royal Marsden. We also attend our local hospital with to see our renal consultant as Sebastian now has side effects from chemotherapy and major damage to his tubular function from kidneys to bladder.
His tubes have been damaged so badly by chemo so now they leak protein into his body which will probably result in kidney failure at some point. So his levels of a certain type of protein in his urine are 17,766 instead of around 0-40. So extremely high. They aren’t really sure what the long-term effects will be of this but he is now on medication for life due to this.
He has to have bladder function tests as a third of his bladder was removed but amazingly he has been potty-trained since June 2016. However has to go to the toilet much more frequently than others. Compared to what we were dealing with this is so much easier.
The worry of cancer never goes and whenever Sebastian says he has tummy ache, I panic but I guess the longer he is in remission the easier it will be. The costs of appointments; travel; accommodation; time out of work is still a strain but you just have to get on with it. Sebastian in himself is amazing and loves visiting the hospital. As he is now older, he is starting to understand more and we no longer have to pin him down for anaesthetic, blood draws or any monitoring stats which makes it emotionally easier.
He loves craft, music, singing, playing sports especially swimming, football and dancing. He has a wicked sense of humour and is a happy little superhero giving us lots of smiles.
Natasha, mum (February 2018)