We just wanted to update you all to say Eloise’s MRI report shows No Evidence of Disease (NED)! The report states there is ‘No evidence of disease recurrence or disease dissemination’. Praise God!!!
Eloise ended up having her 7th intrathecal chemotherapy yesterday, so we are now over half way through the year of maintenance chemotherapy. She tolerated it well and we are very grateful to the staff at the Royal Marsden for pulling out all the stops so Eloise could have the treatment yesterday.
Today we met with Eloise’s neurosurgeon at St George’s. Whilst the scans continue to show low pressure and some microhaemorrhages (most likely from proton), we are going to leave the shunt setting for now and see how things develop – because Eloise is clinically doing much better.
How do we feel?
- Ecstatic, elated and relieved to be honest. All those involved in her care are also really chuffed with the scan too! She’s so far defying the awful odds. We heard that there was even a cheer at a meeting when her results were read out 😊 We are so grateful and at times still can’t believe she is in this position. It’s still a long way to go, but with each scan where she is NED Eloise’s odds slightly improve. Eloise is so far managing to walk a very narrow tightrope.
- Honestly, we also have times where we have ‘survivor’s guilt’. This is hard to articulate, but it’s very real. For ETMR patients, Eloise is doing unusually/remarkably well to be NED at this point. But that does also lead to lots of questions and emotions.
- Optimistic about the next few weeks. Eloise appears to be getting stronger and most importantly enjoying life more and more!
For those that pray:
- Give (massive!) thanks that Eloise’s scan showed that she is NED!
- Pray that Eloise continues to get stronger, be less tired and enjoys life. Pray that she develops both physically and mentally over the coming weeks.
- Pray against absence seizures, tremors and unsteadiness. Pray for protection from infection and anything else that could hold her back.