This blog was originally intended as a place for friends and family to be kept updated on Eloise’s progress – particularly as Pete and I have a huge family, circle of friends and church community (we are very lucky!). Since writing this blog, it has been shared with many, many others – and we know thousands of people have been following our journey and praying for Eloise. It’s been such a blessing and we genuinely feel that people’s prayers have carried us through the turmoil and challenging times. When we’ve had little energy, capacity or emotional energy to pray – we know others are praying for us. This has been a tremendous encouragement and comfort.
Alongside this, other families in the UK with children with ETMR’s have found this blog. Considering the UK hardly has any ETMR cases (we’ve struggled to get data but anecdotally from doctors we talk to, it seems approx. one case a year?), it’s been very unexpected to have two current ETMR families reach out to us via this blog.
Even more bizarrely is that reading this blog has had an impact on their treatment. Such little is known about ETMR’s and we have since realised that so much about treatment on the NHS is unfortunately a ‘post-code’ lottery. Reading this blog has led to one ETMR family reaching out to the same global experts we did and requesting (and eventually accessing) proton therapy, and another family seeking surgery from Conor Mallucci.
The latter family have only recently found out their son, Archie (3.5yrs), has an ETMR. They too, like us, were told that surgery wouldn’t be possible due to his tumour being on the brainstem. After finding this blog a couple of weeks ago and reaching out to us, they have since sought a second opinion on surgery from Conor Mallucci (the neurosurgeon who did Eloise’s surgery – after all the other neurosurgeons saying they were unlikely to get it out). Mr Mallucci is doing the surgery tomorrow (Thurs 15th) at Alder Hey in Liverpool. We would be really grateful if people could pray for Archie and his family throughout tomorrow – we’ve been in the same boat as them with so much resting on the most horrendous and challenging surgery tomorrow.
- So please, please pray for Archie’s surgery tomorrow!
- And thank you for following our journey – unexpectedly, you reading our blog, and increasing its google rankings has meant that others have found Eloise’s story – and it’s given them hope and access to treatment they might not have done otherwise.