it seems like ages since I have updated the blog, I will first tell you about treatment and then I'll do another post about our break away.
Thomas has started the next phase of treatment which involves a medicine called retinoic acid.
This is a treatment that we give at home, we will give it twice a day for two weeks of every month.It is a faff to prepare as it comes in small capsules, we have to cut the end off these and squeeze out the contents and give them to Thomas in a petis filous or similiar.
Thomas has taken the new medicine in his stride, it's just another thing to go alongside the many others that he takes.Thomas doesn't need an NG feeding tube like many neuroblastoma kids so has got used to taking his medicines orally and thank goodness he mainly does so without fuss. His face and mouth have become dry and sore but other than that it's business as usual.It strikes me as odd that we are giving this medicine to Thomas yet we are told wear gloves when getting it ready and to keep all utensils that we use away from the things used by the rest of us, we even have to put all rubbish in a sharps bin so that it can be incinerated!
Retinoic acid will continue every month until january and will be alongside immunotherapy.Sadly in this country immunotherapy is still a clinical trial, children are randomised to recieve one of two arms.
One arm is anti- GD2 only and one arm is anti-GD2 plus something called IL2.
Thomas was randomised to recieve the anti- GD2 alone, which disapointed us as in America a similar trial showed that good results for improving survival.The American trial included something called gmcsf along with the anti GD2 and IL2 , which is not being trialed here.
We have been exploring many different options trying to see if we can get access to all three drugs for Thomas in the UK, sadly this hasn't worked out as we had hoped. It is all very complicated with trial sponsors etc and we just didn't have time on our side. Hopefully families in the future will be able to explore this further and may have more success.
So now we are looking at Thomas spending a week of every month in hospital, the anti body that he will be having causes some nasty side effects including acute pain and therefore Thomas will be also having morphine. I'm dreading the whole thing but a necessary hurdle to jump over. Thomas has been such a trooper throughout each stage of treatment and the relentless testing etc lets hope he can keep it up.
Thanks for listening