After being rushed in to be informed of Eloise’s diagnosis and then told things would move fast (“days and not weeks”) things now feel relatively slow going (which is probably not that surprising as even a day feels quite a stretch at the moment).
Eloise has started on anti-epileptic drugs (AEDs) – which have slotted into the bedtime routine very smoothly, which is brilliant. She continues to have a similar number and severity of seizures – we are really hoping they start to have an impact soon.
We have an appointment to meet with a neurosurgeon at St George’s next Monday. Apparently 4 neurosurgeons have reviewed her case (including those from Kings College Hospital). We don’t yet know their recommended plan for treatment but understand that we will be discussing this on Monday.
How do we feel?
It continues to be a rollercoaster. We have had a couple of days where we were told to shield (so Anna had to stay home from school), and then have been told we don’t need to until our meeting on Monday – so this has all added to the challenge of the past few days. That said, Anna’s school (St Thomas of Canterbury) have been exceptionally thoughtful, caring and helpful with all the disruption.
How we feel generally depends on which hour you catch us/ask 😊. We still feel hopeful for the long term, but feel this is going to be a marathon and that the whole situation of brain tumours is quite complex. We really wish it could all be over very quickly, but we might be in this for a while.
That said, we do feel carried by others’ kindness and care – Anna commented at the weekend ‘Wow, people are being so kind. Wish I could be as kind as them’. So even in the hard times, good moments come and our lovely girls are also learning things through it! Genuinely, thank you for reaching out and loving us – thank you for all the messages and sorry when we haven’t responded.
For those that pray…
- Prayers for peace/calm in the waiting and for us to relax when so much of the next few weeks and months feels uncertain (e.g. we have NO idea about Christmas at the moment…!)
- Prayers that the neurosurgeon will give us a clear recommended course of action – one that all the neurosurgeons agree on and one that we feel peaceful about
- For Eloise’s seizures to reduce in severity and frequency