In August 2020 Eloise started having odd ‘moments’. She would run up and cling to us for a few seconds and then carry on toddling around. Our childminder was the first to mention that these ‘might be a type of seizure’. We went to the hospital out of hours and to our GP.

On the 27th of November 2020 we were urgently called into the Epilepsy consultant’s office to be told that an MRI had shown Eloise has a brain tumour. We felt heart-broken and devastated.

In February 2021 the neurosurgeons confirmed that the tumour biopsy is an ETMR brain tumour. This is a very, very rare, highly aggressive cancerous brain tumour with a dismal prognosis. We were given 10 to a maximum 20% survival chance — and the average survival is 9–12 months. Added to this, Eloise’s tumour is in the riskiest part of the brain to operate, and neurosurgeons are unlikely to be able to remove it.

At this point you start to wonder if this is really happening to you… and to your precious little child.

How do we feel? Like we’re constantly ‘winging it’ through the diagnosis, brain biopsies, surgeries, blood transfusions, high-dose intensive chemo, MRI scans, Proton-B therapy, blood tests, home and hospital trips and numerous hospital stays. We are grateful that Eloise had her first dose of intrathecal topotecan in the UK — possibly the first child in the UK — and is ok.

Eloise is a bundle of joy. She loves listening to, singing along to and dancing to Christian songs. We know it’s going to be a long, slow, challenging few months and year ahead.

Brain tumours are beyond awful and there is no clear ‘end’. Treatments lead to long-term effects that the children, if they survive, have to live with for years to come. THERE NEEDS TO BE BETTER TREATMENTS.

We are continually aware that cancer sucks — paediatric cancer sucks. We need better treatments.