A long – very long road ahead

A long – a very long, road ahead.

Its taken us a while to know how to write this blog…

Yesterday Eloise had blood tests (for biomarkers) and we met with a Neurosurgeon at St George’s in Tooting.  We previously understood that either a biopsy or surgery were going to be discussed.

To be honest, we weren’t expecting what we were told.  As we said before it’s all very complex.  And apologies for any mistakes with the below – we aren’t medical, but are doing our best to follow the detail and to simplify it for other people too!

The good news is that the tumour appears to be a low grade (but we haven’t got a biopsy) and the Neurosurgeons think the scan indicates this.  The challenge is that it is in a very awkward place to treat.

In short, there are 3 challenges:

1. Seizures/Epilepsy – Eloise has focal seizures.  The medication looks like it might be making a difference (over the last couple of days the number and severity has slightly improved).
2. Cerebral Spinal Fluid on brain (due to tumour) has built up.
3. Tumour is on the tectal plate – the Neurosurgeons think its low grade (but don’t know) but the tectal plate is the area right in middle of brain at the top of the brain stem.  This is a very tricky part to get to – for surgery or possibly even difficult to do a biopsy.  The tumour is 2cm by 2cm.

The neurosurgeon went through various options with us

Firstly, the Neurosurgeon thinks Epilepsy is separate to the brain tumour and not related – this is contradictory to what we’ve been told before (in writing) and actually doesn’t sit well with us – but we aren’t medical professionals.  We will apparently need to deal with the epilepsy separately via medication etc.

Options:

1. To deal with CSF (fluid) they can do either a shunt or ETV
2. To deal with the tumour they can do surgery – but they won’t be able to remove it all via surgery.  Chemo/radio would therefore also be needed after if it was needed to remove it all.

At the moment the risks of these surgical options is too high. The Neurosurgeon went through the risks/likely outcomes of some of the surgery and these are high risks – mainly due to the location of the tumour etc.  

So the recommendation is to ‘watch and wait’ and do a brain and spine MRI in Feb to see if the tumour has grown (which will tell us how aggressive it is i.e. which grade).  Understandably, they only want to operate once Eloise’s symptoms justify the risk of the procedure – there is the ‘Do No Harm Principle’.

In the meantime we also need to see an Eye/sight specialist with a specialism in neurology, and an endocrine specialist and also wait for the Biomarker results from bloods she had done today. Any of these results could trigger some different recommended action and for Eloise to have surgery, but for now we are likely to just wait until the next scan in Feb.  Depending on the results of this scan we might then have further active monitoring/watch and wait for many years. To use our own analogy, we will be waiting until one of the lights (tests with a specialist) goes off on Eloise’s dashboard until we take action.

How do we feel?

• To be honest – very confused.  It’s a lot of information to take on board (the above is an attempt at a summary) and the path ahead is not clear.  We aren’t sure how to view the situation – all the options are still very much on the cards, with none being ‘simple’ or ‘solving the problem’ but also all involving significant risks – and we just don’t know when we will need to take these routes.
• We also feel surprised that there is the suggestion that Eloise has epilepsy despite the tumour.  This feels odd to us and we are going to request a second opinion.
• Feeling like this is a LONG journey.  Our best case (as we confirmed with the Neurosurgeon) is that she has all these tests for 10 years, nothing grows, the fluid doesn’t worsen, and Eloise’s seizures ‘magically disappear’ or get better with medication.
• A little lost and not knowing how to view the next few months or years, and just deeply sad that our darling girl is going to have to face so many ongoing tests and challenges.

I’m sure you, like us, will have questions too.  We have sent some further questions to the Neurosurgeon and hope some of these can be answered (at the moment it feels like a lot of responses are ‘we don’t know’)…

For those that pray…

• That Eloise thrives and continues to love life – and that her seizures continue to improve and stop soon!
• That we can get a second opinion from Great Ormond Street Hospital and that this helps us feel peaceful and that we can get some clarity on our further questions
• That if a different course of action (rather than doing tests and waiting until February) is needed, that something eg a test result, will prompt this
• That we can enjoy Christmas despite the challenges – and the girls can have huge amounts of FUN after a hard few weeks
• That we can quickly adapt to a ‘new normal’ of appointments/scans, waiting for results, further discussion over next steps and not knowing what’s around the corner.  All of us have had to ‘get better’ at living with uncertainty in 2020…we just might need to become REALLY good at this!