Just a little post:
Would be really grateful for prayers for a meeting today that our oncologist is having about Eloise’s treatment. We understand our oncologist is presenting to the Intrathecal committee, with some evidence from the leading ETMR researcher from Canada, on the need/benefit for Eloise to have intrathecal topotecan as a maintenance chemotherapy drug over the next year – to increase her chance of survival. ETMR’s are just so deadly. As we’ve noted before – both the drug and the intratethecal method (ie administering the chemo drug directly into the brain/spine) need to be approved, as they’ve not yet done this in the UK before.
Please pray that that somehow they approve it – and that Eloise can have intrathecal topotecan, and that we also work out and can access the accompanying oral agents Eloise needs to have alongside this. Having the maintenance chemotherapy in the UK, under the NHS, would just be SOOO preferable for zillions of reasons – avoiding the need to travel overseas every month for at least a year (issues with covid, visas, travelling all the time with a poorly toddler etc) , separating us as a family again, and also the huge cost (still undefined). We will do whatever it takes, and are hugely grateful for our marvellous oncologist – but the UK is our massive preference for Eloise, ourselves and Anna.
We don’t know when we will hear the outcome of the meeting, and there might be further approvals needed, so whilst we wait we continue to take forward the options overseas too (mainly Spain and the US).
We desperately want our girl to live – and to have life in abundance! She’s living upto that at the moment, having done miraculously well despite the odds and she’s loving life, and we pray earnestly that this will continue.
We would really value your prayers for today’s meeting .. Thank you xx