Praising and lamenting

Overall, the last few weeks have been good.  Eloise has stayed out of hospital (apart from for pre-organised appointments) and she’s been enjoying the resemblance, at times, of a more ‘normal’ life  (excluding community nurse visits, chemo being given, having an NG feeding tube, feeling poorly/not eating much, being unsteady/struggling to walk etc.)

We’ve not written a blog for a while, so this is a longer post about how we are feeling at the moment. 

Praising

We can’t overstate the miracle it is that our girl is here with us today and at the last scan she was NED (with No Evidence of Disease).  We will never take our days with her for granted.  Last year we were given 10% (at the very max) 20% chance of survival.  I (Mel) remember very vividly, before walking out of the meeting with the oncologist asking her ‘Please, just tell me you know of one survivor?’, but the oncologist was deafly silent….And in addition to ETMRs having a dire prognosis, Eloise’s tumour was in an inoperable location.  We knew we were in the space of needing a miracle. And over this past year we’ve been witnessing that miracle!  For a reminder of the story so far see here…

So we praise God for his goodness, for getting Eloise to be NED at her last scan – and for the countless miracles and breakthroughs that have led to Eloise having pioneering treatment and being where she is today.  We continue to hold onto what we wrote in our ‘Ebenezer blog’ – God has brought us this far and we put our trust in Him that He will continue to be with Eloise and us all.  The song ‘Way-Maker’ has felt particularly pertinent.

And we also praise God for some small breakthroughs in recent weeks (which to many others won’t appear like they are):

• Eloise has started getting strong enough to walk in the garden again.  She was so weak and unsteady that for the last few months she wouldn’t stand on her feet outside (plus it was cold, which she disliked – possibly because it caused neuropathy).  This has not been great for Pete/my backs, especially as Eloise generally hates the movement in the buggy.  A few steps outside has been really encouraging to see and we look forward to warmer months and more of this!
• Eloise has sat in – and enjoyed – the garden swing!  She hasn’t wanted to go in a swing since surgery last March.  Small things that ‘normal kids’ do, but have been impossible for her.
• Eloise has really enjoyed a new experience – Soft Plays!  A wonderful company in Guildford, Gym Jams, has been exceptionally kind and let Eloise use their soft play for half an hour (all Eloise can manage) before they open for other children, and for free.  This has been utterly fantastic – it’s great from a physio and general play perspective (and infection-safe) and Eloise now regularly asks for ‘soft play!’.  We are so grateful.
• Eloise is starting to enjoy some books again (short, low-sensory ones).  For the last 6 months since proton, she has generally refused to read stories as ‘its all too much/too much visual sensory overload’.

Lamenting

Unfortunately, the dire stats for ETMR patients appears to be holding true amongst children we know of fighting this deadly, terrible disease.  As we have commented on previously, this comes with a whole host of emotions.  Our hearts breaks for them – knowing all too well, that Eloise too, statistically should not be with us.  For those that pray, please pray for these children and families.  It’s just so unfair.

We also lament over what ‘we have lost’.  Google photo unhelpfully pops up on our phones and shows you ‘1 year ago today’.  This time last year, Eloise was just starting her first induction chemo round, and was jumping and bouncing around in her cot, with her bright-blonde hair.  She was energetic, chatty, physically strong , smart , sassy and advanced beyond her age. She was at this point ‘chemo-naïve’ as our oncologist describes it. Our lament is that so much has been stolen this past year.  Eloise’s language and development have basically stalled at this age (with just some small, slow progress), she’s physically significantly weaker, and her zest for life has largely been zapped.  And her hair, whilst it has returned, is still very different to her beautiful bleached blonde locks.

But then we remember what her body has taken this year – to ‘save her life’, the brain surgeries and treatment has had to be so aggressive.  Chemotherapy and radiotherapy (proton) kill cells – and unfortunately not just cancer ones. She, and all other children that go through any-type of similar treatment are absolute heroes. 

Please will you join with us in praying that the things we saw in Eloise bouncing around in her cot a year ago, will be drawn out of her again? We know this is likely to take many, many years post-treatment (and in theory, many side effects could be permanent), but we’d be grateful if you could pray for some specific things:

• Pray for her eyes that have an upward gaze (and head titled down).  Pray she doesn’t have double-vision (she’s too young to say, but apparently this could be happening).  Pray for her eyes to be aligned.
• Pray for her physical strength.  Pray she can re-learn, and have the strength to, jump and bounce again.
• Pray against tremors, unsteadiness and any absence moments.
• Pray for her smart intelligence to once again shine.  Pray against any slow processing speed as a result of the proton therapy. 
• But more than anything, pray she smiles, laughs and loves life!

We have days when we see glimmers of hope in all of these areas.  But we’d be really grateful if you could pray for sustained breakthrough in these areas – even whilst she’s still on treatment, suffering the side effects of her current drugs and progress feels stalled. And please, of course also continue to pray that she forever remains NED!

We are utterly proud of our darling girl.  Eloise is inspirational, a fighter, has the kindest nature and we are so privileged to be entrusted as her parents.  Keep going Eloise!