The two EMRT experts, who we emailed very late on Friday night, both got back to us over the weekend. They both provided detailed emails with some of the critical areas to consider, showed some of the scans to their local teams for further analysis and advice and kindly connected us with a Neurosurgeon in the UK.
The Neurosurgeon phoned us on Sunday to also offer his advice and assistance (he works in the NHS).
Throughout this journey we have been humbled by the speed, care and love that so many important, busy Drs and Professors have shown to us. As one of the experts highlighted – acting quickly is critical when treating ETMRs – so we are especially grateful for their fast replies.
Both experts agree that Eloise needs surgery to remove the tumour and for us to do this as soon as we can.
Tomorrow Eloise has an MRI (her 4th) to check what impact the chemotherapy has had on her tumour. Hopefully, the chemo will have stalled the growth of the tumour and ideally, it will have shrunk it. Specifically, it would be amazing if the tumour has reduced away from the brain stem, which is what is making surgery so risky.
The Royal Marsden/St George’s MDT will re-review Eloise’s case again on Friday, in light of the latest MRI, to discuss whether surgery is an option.
Eloise’s case will also be reviewed by another MDT team from Alder Hey (Liverpool) – most likely on Tuesday (tomorrow). This will be the MDT that includes the NHS Neurosurgeon who has successfully removed an ETMR.
Alongside this Eloise is now starting to rapidly loose her hair. Whilst we knew this day would come, it is hard to fully prepare yourself for seeing your daughter’s beautiful blonde hair fall out in large clumps without feeling overwhelming sad.
For those that pray:
- Praise for the fast and detailed response from the ETMR experts.
- Pray that the tumour has responded to the chemotherapy. Specifically, that the tumour has come away from the brain stem.
- Pray for wisdom for the various MDT’s and specifically the neurosurgeons, who have to make complex decisions. Ideally we would like the Neurosurgeons all to agree that the tumour is operable and for them to feel confident of a gross total resection (i.e. taking it all out)
- Pray for favour and wisdom for us as we navigate various medical advice, processes and decisions this week.
- Pray for continued strength and energy for us to keep fighting for Eloise. Anna is now starting to really miss Eloise and finding it difficult not having her parents around, together. She is doing so well but verbalises how much she is missing Eloise and us.