Firstly apologies this post is very, very long – we don’t anticipate future posts to be so long, and sometimes we might just post one line.
So where are we?
Background
As some of you know, over the past few months our daughter, Eloise (17 months – born 6 June 2019) has been experiencing odd ‘moments’. They started as situations where she would run at us and suddenly cling onto us for dear life, go red in the face and breathe heavily. We noticed these moments but thought she was doing it out of panic – children can sometimes do odd things especially when they are little and learning to walk etc. It wasn’t until our wonderful childminder (who we will forever be indebted) mentioned to us in early September that she thought these moments might be seizures and suggested that we should get them checked out. We hadn’t contemplated these moments could be seizures (we only really thought of seizures as the grand-mal version) and we are very grateful that someone with more experience was brave enough to have a difficult conversation.
We got Eloise first checked out by a Doctor at the beginning of September. A very long story, but after errors/delays in the system, over the past few weeks Eloise has had an EEG, an ECG, a sleep EEG, and then on Monday had an MRI under a general anaesthetic to try to get to the bottom of the issue. The early thinking was that Eloise had possible ‘temporal lobe epilepsy’ – and the MRI was to just check there wasn’t a structural cause (which was deemed very unlikely).
During the period all the tests took place (since September), Eloise has been having an increasing number of seizures – starting from approx. 2 per day, increasing to 5-8 per day, and now between 10-14 per day. The seizures have also become more obvious – including shaking of her limbs and looking vacant.
Diagnosis
On Wednesday morning we got the call from the Epilepsy Consultant asking us to both come in immediately to talk about the results of the MRI, which showed ‘a problem’. We weren’t expecting results for 2-3 weeks, so we were NOT expecting a call.
At the appointment we were told the news that Eloise has a brain tumour (the Dr was good at not using the word brain tumour in the first few sentences, to soften the blow). What we know so far is that it is a ‘moderate size’ astrocytoma tumour – it appears to be on her brain, rather than ‘in’ the brain. The seizures that Eloise have been having are a symptom of the tumour. We don’t know much more than that in terms of the detail at the moment. We don’t know what grade it is yet (but apparently most are low-grade).
We’ve been told today (Friday 27th Nov) that the Neurosurgeons and a Multi-disciplinary team at St George’s in Tooting will be meeting to decide the course of action – mainly to decide whether to do a biopsy first (which will still require an incision in the skull) or to go straight for surgery.
All we do know, is that this is very unusual and as our Consultant said, we are in for a rough ride over the coming period – and that things over the next few days and weeks will be very fast-paced.
We think the long term prognosis ‘should’ be ok based on percentages (but being honest, statistics aren’t our friend at the moment. Only approx. 400 children in the UK of any age have a brain tumour… if you look at the % odds of those it all feels very odd, especially when Eloise is also only 17 months…!)
How do we feel?
As you can probably imagine a whole mixture of emotions – shock, horror, anxiety about the coming months, concern over our capacity to keep going and support the girls, concern that Eloise already dislikes Dr’s (and that we cant explain all of this to her!)…
But also:
- Feeling in awe of what Dr’s can do and feeling exceptionally grateful for the healthcare we do have
- Thankful that this has happened now, and not in the ‘first wave’ of Covid-19 where MRIs under general anaesthetic were 4 months delayed. Now, during this second wave the NHS are continuing with the tests, and also importantly, continuing with paediatric cancer surgery (which was apparently delayed earlier in the year).
Thank you everyone for staying at home to control the virus….it’s meant people like our Eloise can have the treatment they need. - Grateful that Eloise is developing exceptionally well – she walked at 10 months and is chatting away and generally loving life (except the seizure moments). She really is a kid that just smiles all the time and loves life!
- Grateful that Mel’s work have let her have some time off over the next few weeks to attend all the appts/spend time in hospital and it also enables Eloise to be at home and reduce Covid risks. We are also grateful for Pete’s work who have also been very supportive, which will enable us to best balance life and keep going.
And also, massively thankful for the outpouring of love and care… thank you for all the offers of help. Over the next few months we are likely to need to take you up on it 😊
For those that pray…
We have grouped them under different headings
For Eloise/Eloise’s health
- For the meeting today – that the team would decide the best course of action
- For Eloise to have limited side-effects of the Anti-epileptic drugs she started taking last night, and that these drugs would reduce the seizures, whilst we also work on the tumour…
- For her not to be too distressed by all the forthcoming procedures and for her to continue to enjoy life somehow
- For ultimately this to be gone and for Eloise to have a full and abundant life!
(Her name Eloise means ‘warrior/fighter’, and her middle name ‘Zoe’ means ‘abundant life’. When we named her we felt the meanings were really important….and it now feels more than ever that this is the case).
For Anna
Anna is the most caring sister and one of the highlights of the past 17 months is how close the 2 girls are. The girls just want to be together all the time – despite being 3 years apart, they adore each other. Please pray for Anna that she doesn’t get anxious and worried about the situation and that she can still have a great and happy few months ahead.
For us
- For us to know how to come to terms with this
- For energy to keep caring for the girls which are at an exhausting age even at the best of times (and putting on our brave face!)
- Seems an odd one – but parenting this situation seems a new challenge. How to balance ‘fairness’ between the girls, caring for them both (and not side-lining one of them), not becoming an anxious parent etc etc.
- To be close to each other, even if we are emotionally and physically exhausted.
For our family and friends
We realise this also comes at a shock for many others too. Please pray for them too – particularly as Covid restrictions make all of this so much harder as they can’t help so easily/see Eloise.