The scan showed no evidence of any tumour regrowth! Hallelujah and … phew!
It’s been a pretty hectic and stressful past couple of weeks and these were the lines we wanted to hear. We are extremely grateful to the NHS for their combined and prompt response to Eloise’s seizures restarting, resulting in rapid appointments with:
- An epilepsy consultant
- An MRI scan
- A Neurosurgeon
- A review of the results by a Neuro-radiologist
- An EEG test
- Eloise’s scans being discussed at the Paediatric-Neuro-Oncologist MDT meeting
- A short call with an Oncologist (full appointment happening this coming week)
In summary, Eloise’s scan shows no evidence of the cancer returning but does show other changes. These include a small build-up of fluid (which in the words of the excellent neurosurgeon “isn’t very exciting”) and some increased marks/lesions of calcification in another area of Eloise’s brain. There isn’t a clear consensus on why Eloise’s seizures suddenly returned or what the increased calcification in Eloise’s brain means. It is potentially a result of Proton beam therapy but given it is such a new treatment and not normally given to children so young, there is no data to back this up.
For now, we will slow down Eloise’s drug-weaning schedule, to give the brain more time to get used to the changes, continue to watch how she does and monitor changes/lesions in future scans. We need her to come off the sodium valproate so the next few months will be a long process (and hoping that somehow she can, without seizures starting). We will also see what the EEG results show.
How do we feel?
So relieved that the cancer hasn’t returned. So, so grateful! Ultimately this is the big win.
Grateful for the love and dedication for Eloise by all the staff involved (a surgery slot with the neurosurgeon had been penciled in for Eloise just in case she needed it – which she didn’t – showing both the dedication and also the recognition of the potential seriousness).
Thankful that Eloise doesn’t appear to have had a seizure for the past week.
Conscious that we might be in this (and other) ambiguous situations for many years to come – medical professionals won’t know for definite what is causing changes/any new symptoms, and can’t necessarily treat the issues. Brain tumours and being on the cutting edge of new treatments (that have done their job in killing the cancer!) cause other issues.
For those that pray
- Give thanks that there is No Evidence of Disease!
- Give thanks for all the love, care and prayers we have received from the NHS, family, friends, and colleagues
- Give thanks that Eloise is getting stronger and enjoying life, and that her seizures appear to have stopped over the last few days. Pray they continue to stay away.
- Pray her brain heals and that it is protected from side effects from all the changes and treatment
- Pray for wisdom, patience and peace as we work out the best path to reduced drugs, improved health and liaising with various health professionals