Approval for maintenance chemo in the UK!

The Royal Marsden Drug’s and Therapeutic committee unanimously approved the proposed maintenance drug combination for Eloise! This is unbelievably good news and an incredible achievement by our wonderful Oncologist and the Head of the paedatric unit (who presented the case at the Committee). To put it into context, it means that Eloise will:

• Receive a bespoke combination of drugs for her tumour, as recommended by the Canadian ETMR expert – she will be the first child to ever receive this combination of drugs on the NHS.
• Receive the topotecan drug intrathecally (inserted directly into her Cranial Spinal Fluid, via lumbar puncture) – she will be the first child to ever receive treatment using this method at the Royal Marsden.

This chemotherapy will be for 12 months.

We feel so incredibly indebted to a number of outstanding oncologists (In Canada, USA, Spain and especially, those at the Royal Marsden). The team at the Royal Marsden are still ironing out the final details and forms but aim to be in a position to start the treatment in the next few weeks. This means that we won’t need to travel abroad for treatment, can (probably) access treatment as an outpatient close to home – meaning that we won’t be split up as a family and ensures that Eloise has continuity of care, entirely within the NHS system. Wow.

Before Eloise starts the maintenance chemotherapy she will need an MRI to assess how she is doing post-proton therapy and as a baseline before the start of more treatment. We know that ETMR tumours are aggressive and that relapses frequently happen. This is a crucial MRI (it’s the longest time so far between MRIs) and we so desperately need it to be clear and to show NO ambiguity, questionable marks, or evidence of new growth. We know that Eloise’s brain will continue to be inflamed/swollen from the radiotherapy for around two months post-treatment and ordinarily MRI’s are only taken after this period. However, given the time-sensitive nature of ETMR’s and the need for further treatment Eloise will have a scan early next week (exact timings TBC). Please, please pray for a clear scan.

Eloise has now been back home for two weeks and, in general, is doing amazingly well. She is walking around, enjoying the garden and all her toys, she is rediscovering her love for music and dancing and is smiling and laughing a lot more. She really is amazing and a true warrior.

However, Eloise is unfortunately struggling with some slight sensory issues (very insightfully identified by an excellent OT) and we also have some concerns over her eyes. Eloise has been through a lot of treatment in a short space of time and we know that her brain is currently swollen from the proton therapy and hope that these are only short-term side effects and not permanent. Eloise continues to have tests and assessments with various specialists to monitor these and other side effects and will do for a very long time.

In summary, Eloise is doing remarkably well and we are exceptionally grateful that she can access ground-breaking new treatment close to home on the NHS, which we hope she can receive as quickly as possible. Before she starts treatment she will have a crucial MRI, that we need to be clear.

For those that pray:

• Gratitude for the approval of the maintenance chemotherapy! Give thanks for all the amazing oncologists, for their support and persistence.  Gratitude that we won’t be split as a family, gratitude that we can access the treatment on the NHS and in the UK.
• Please pray for her MRI to be clear – for there to be no ambiguity, no re-growth, no new tumours.  Please pray for peace as we wait for this MRI as we know it is so crucial.  We continue to feel we are living on a knife-edge and only one day away or one scan away from things being so different.
• Please pray that Eloise can start the maintenance chemotherapy quickly – that there are no unexpected hold ups.
• Please pray any possible sensory side effects of the tumour and treatment are short-term and that we can help and support Eloise through all that’s going on in her very little but attacked brain!