Further update: 7th April 2021
We have decided that the best way forward to try and keep our talented & cheerful little girl just the way she is, for as long as possible, is to opt for the ‘hybrid’ option with neurosurgery option 2. If you’ve studied the information above, we are certain you’ll understand how agonising and emotive a decision this has been for us as Eleanor’s parents.
We feel that getting a little more of Eleanor’s main tumour gone by debulking (along with an additional procedure that opens more of a CSF pathway in her brain), might just give Eleanor a fighting chance at avoiding a potential emergency admission to hospital in the future; particularly if her tumour continued growing at the rate it has been, as it could eventually cause a dangerous blockage in her brain.
Getting more tissue from the main tumour by debulking also loans itself to a more conclusive pathology report, potentially leading to more targeted treatments in the future. We know that more chemotherapy is certainly on the horizon, possibly as soon as she recovers from this surgery.
Finally, pushing the possibility of any type of radiotherapy further and further in to the distance and maybe over the edge in to never being required is our ultimate goal – although the possibility of this being required is always going to hang over us, until a point where Eleanor’s tumour is no longer active or medical science catches up.
Therefore, Eleanor will be admitted in to Kings College Hospital on the 13th April 2021 (now changed to 14th April), her Neurosurgery will take place on the 15th April 2021. The early admission is for pre operative tests; further detailed MRI brain imaging and many other neurological / neuropsychological tests we probably aren’t even aware of. The operation itself can take well over 5 hours (often running in to double digits) and we will not truly know how successful it has been until 1. Eleanor wakes up properly & 2. a post operative MRI scan of her brain has been carried out.
There’s likely to be many other cognitive follow up tests to ensure Eleanor’s short term memory has not been affected (as this is one of the critical structures they have to pass through), as well as the potential for many other checkups.
At this stage, due to the covid pandemic, only Kelly & Eleanor will be going in to the hospital.
The risks are REAL and we are truly terrified.
There really isn’t anything anyone can do, so on the 15th April 2021, whatever your beliefs; please please keep Eleanor firmly in your thoughts and prayers, sending as much healing energy and positivity as possible her way. It will be a long day for us and an even longer few days for her.
Read more about Eleanor’s Neurosurgery here…