2 years on from Eloise’s major surgery – how has our perspective changed?

2 years ago tomorrow Eloise had surgery to remove her brain tumour. A high grade cancerous tumour in the middle of her brain (literally) that neurosurgeons across London and the South East said they were unable to remove … but on March 16^th 2021 in Liverpool, despite the odds, Eloise had her tumour removed.

That day is engrained in our memory – much of it is still very vivid. 12 hours after Eloise was put under general anaesthetic we were able to see her in intensive care (during Covid lockdown) and were told it was only a Near Total Resection. However, the following morning the neurosurgeon, Mr Mallucci, came into intensive care and told us that although he thought he’d left a small amount of the tumour (as it was wrapped around the vein of Gallen in the middle of her brain) the radiologists had looked at the scans and said they couldn’t see any tumour on the scan… and it was a Gross Total Resection. To this day we are still in awe of this miracle.

Many people have asked how our perspective has changed through all of this. In many ways we are quite different to ‘pre-Eloises brain cancer’. So here are a few of our reflections:

• Unsurprisingly, we certainly live for the moment, enjoy the simple things and generally ‘plan a little less’.  I think we’ve had to face the hard reality that we are not in (complete?) control of the day ahead or our life overall, and try to enjoy the moment that’s in front of us. 

• We generally keep our expectations pretty low (to avoid disappointment) but have equally found there to be so much enjoyment and freedom in this (a bit like many of us did during Covid lockdowns?).  I hope we keep much of this attitude of there being ‘less pressure to do/achieve’ as we’ve found this to be a much healthier and more gently satisfying way to live.

• Several people have asked about Mel’s ‘career’.  I (Mel) loved my work in international development.  It was my passion, ‘calling’ and was the thing that would get me up in the morning.  Since being on a long term sabbatical from the FCDO and caring for Eloise I’ve had days when I’ve missed the interesting nature of the work, the intellectual stimulation and having colleagues/being part of a team.  But I don’t feel bitter about this in the slightest (genuinely) – the circumstance with Eloise has made me grateful for all the opportunities I did have to travel the world and do interesting work pre-paediatric cancer. 
  
  Life is not linear – it’s much more seasonal and even circular.  I’m in a different season now – and either I can choose to embrace the season I’m in (even if it’s not my first choice) or push against it and be frustrated.  I’m choosing the first (most days!).  And I also now see the great things in this new season – most notably being less ‘always busy’ and having much, much more time with our wonderful girls. 
  

• Measuring impact differently (this perhaps links in with the above ‘Career’ reflection). Much of our Western society values our ‘impact’ and apparent ‘success’ (hence the moving forward/linear sense of progression).  To be honest this type of conversation has wound me up at times over the last couple of years.  It appears to us to be a very ‘privileged mindset’.  Faithfulness (alongside a whole bunch of other stuff) is what God requires – not impact (that’s up to Him).  Being faithful with whatever lays before you – whether that be big or seemingly small (like just caring for the one child in front of you).  And actually being faithful in the small things can be a lot, lot harder than the grander things that can appear externally as more ‘impactful’. 
  
  Perhaps say “thank you” or “well done” to someone you know who is just getting on with the stuff that needs to be done (but is perhaps perceived as “less impactful”) …

• The situation with Eloise has written off a lot of things for us and life looks quite different to how we’d envisioned it.  We aren’t able to travel abroad in the same way (which was a key part of our life), work/not working is different and we are very much ‘staying in Guildford’ for the foreseeable future (we didn’t necessarily envision this).  Again, we try not to be frustrated by this.  We came across a quote that resonates with us ‘We often think life is about the choices we make, but often life is about the choices we don’t make’ (in our case, having a toddler with brain cancer).  The part we can play is seeking Godly wisdom to make the best choices with the ones we have in front of us.  We try our best to do this.

• We have greater compassion for families of children with special/additional needs and for carers more generally.  Not only is it challenging physically, mentally and emotionally it is very lonely bringing up children with additional needs!
  
  For example, children with special needs can’t do the same as their peers so social situations can be challenging or impossible.  For example, at a soft play, parents might let their kids run off whilst they have a coffee and a chat, but parents of kids with special needs often can’t do that – they can’t leave their child (and that’s if they can even bring their child to the soft play in the first place!).  So the parents miss out on the conversation and can feel isolated.
  
  Furthermore, everything takes a lot more planning, thought and organisation.  E.g. Can the child sit in that chair (or does it need to be adapted), is there space to change your child, do they need different food/a feed machine (can they charge their feed machine, do they have syringes etc.), can the child engage in the activities, will this be too much of a sensory overload, is this situation an infection risk (an issue for children with various autoimmune disorders), can the child even get in a car (e.g. Eloise used to hate even a short car journey – it clearly made her feel very poorly).  The list goes on and on… 
  
  If you have friends with children with any type of special needs – look out for them.  Like a Swan, they might appear ok on the surface but underneath they may be paddling ferociously.

• Intentional input pays off, but is exhausting!  Eloise has missed out on huge sections of her development and has numerous ‘small’ challenges. To plug these gaps and help her develop, her health professionals (and us!) have to be incredibly intentional about teaching her.  Eloise isn’t automatically just learning how to jump – we have to teach her lots of exercises that help her brain improve coordination and balance alongside build up her physical strength to be able to do this.  We (and health professionals and nursery staff) have had to teach and train her a lot more than for a ‘normal child’.  For Eloise, this intentional input really pays off, but requires significant time and energy. However, it is also emotionally exhausting – it can be sad/distressing, for us and her, that she can’t just automatically do what other children can!  It’s also just weird – naturally you expect your child to just be able to do certain things, but you realise that seemingly simple things are actually quite complex to learn.

• We also have sadness that things are so challenging for Eloise. Some days this deep sadness is just there – we feel sad that so much has been stolen from Eloise…  Other days we are happy and grateful for how well she is doing – other days sadness is the main emotion.  It’s an odd tension.
  
  But this sadness is coupled with a continual reminder (by virtue of Eloise being with us) that God can do the miraculous. He has done countless massive miracles over the last 2.5 years and these are a reminder that anything is possible with God.  So we hold onto these reminders, praying and hoping that God will continue to do miracles in Eloise’s life.  Praying that Eloise is not hindered by the after effects of this brain cancer or its treatment – that she lives up to her God-given name and has life in abundance!

For those that pray:

• Give thanks for the countless miracles that God has done to get Eloise to this point.
• Pray for families with children with additional needs – pray for strength and support structures to enable them to keep going every single day.
• Pray for Eloise – for her atypical absence seizures and tremor to end, for her coordination, memory, her eyes, her endocrinology, her hydrocephalus, her processing speed and much more (see previous blogs).  Pray she grows to be everything God intended her to be!
• Give thanks to God for all the prayers and support we and Eloise have received

And here is a little reminder of the miracle two years ago today – an MRI image of Eloise’s brain on the morning with the tumour (circled), before it was removed. (Note: the cursor is placed where the neurosurgeon entered to get to the tumour!)

And a photo of Eloise taken today!