Marking a Massive Milestone – Eloise’s 4th Birthday.  And an MRI tomorrow…

Today, Eloise turned 4!  If you have been following this blog for a while, you might remember that we have for a long time been saying that this was the point we were hoping to somehow reach! 

When diagnosed, Eloise’s statistical odds were awful (10%, at the very most 20% chance of surviving).  But, we were told, if she somehow managed to defy these odds and be 2 years NED (with No Evidence of Disease) and reach the age of 4, then, based on the anecdotal evidence available (with ETMRs being so rare, the statistical evidence is very weak), then her odds would change dramatically in her favour – 90% chance of surviving ETMR.

Shortly after being diagnosed we said that, if Eloise managed to reach her 4^th birthday, we would throw a really big party.  So on Sunday we did!  It was a truly special occasion, with friends and family from all over the country traveling to be with us (from Pembrokeshire, the Peak District, Peterborough, Devon – alongside many more local etc).  Family, doctors, nurses, school/nursery staff, friends, church friends all came.  We celebrated Eloise, outlined the journey she had been on, and thanked people for the part they played in Eloise’s journey.  Here is one of the boards we put up at the party. 

The list of people to thank is so long.  In Africa they have a saying, ‘It takes a village to raise a child’.  Well in Eloise’s case, it’s taken people from across the country and world.  We can’t thank everyone enough. 

So thank you to you all, for the part you have played – praying for Eloise, sending us messages, sending us cards or presents to cheer us up, cooking meals for us, linking us up with specialists etc., etc. – the list goes on and on.  None of your kindness, love and support has gone unnoticed and it really has made the hard days, just a little brighter.

Eloise is doing really well comparatively.  When we think back to her turning 3 whilst on chemo, she really has made significant strides.  Her energy levels are much higher, her language is improving (it feels like we might be turning a corner with it – and Eloise now has just a mild-moderate delay).  Physically she is getting much stronger, walking further distances, climbing, and most importantly in Eloise’s world – she’s truly mastering scootering.  She’s got so enthusiastic about scootering she now likes to practice scooter stunts on the patio.  We feel this photo sums up Eloise! 

Eloise continues to adore nursery and has made some wonderful friends.  Seeing her with her friends and being so happy is something we really cherish.  She also continues to be fanatical about swimming.  Mel’s mum has a small pool that Eloise demands to swim in when we visit (literally 2.5 hours at a go, and she starts demanding this at 7am!).  We don’t take these moments of goodness and joy for granted and perhaps they feel even sweeter than had we not gone through some of this.

Health wise Eloise has been doing well.  She basically stopped having seizures after she took the final dose of Sodium Valproate in March, which is amazing and not something we necessarily expected to happen. This has been so good for her (her poor little brain needs a rest and to be able to develop!).  She’s also re-started her newborn vaccinations which were wiped out by the chemotherapy, so now has a little bit of immunity to some things.

That said, it’s not all been completely plain sailing.  We’ve had a few minor bumps – Eloise needed an ultrasound on her shunt (all fine in the end) and also had a couple of atypical absence seizures the other week, having had none for months – she then developed a tummy bug a few days later (which was actually reassuring as helped explained the seizures!).  The NHS and the Royal Surrey were great on both accounts.  It also looks increasingly likely that Eloise will need growth hormones in due course (most likely daily injections that we will administer) – still all to be confirmed, but tests so far indicate we are heading in this direction. We were told this was likely from the outset so aren’t that surprised by it.  Life is certainly a lot more normal than the past few years, but is likely to still never be quite the same/’normal’.

Tomorrow, Eloise will have her scheduled MRI under general anaesthetic at St George’s  (she’s under GA for about 1.5 – 2 hours as they scan her brain and spine).  She’s now less of a fan of hospital trips.  Perhaps this is a really good thing, as before she was so ‘institutionalised’ but now she realises that there is a fun world outside!  She’s not really looking forward to the ‘no-breakfast’ and she asks why she needs these magic sleeps now that chemo is over.  We explain, but she seems not very impressed….  So prayers for tomorrow would be great.  We also have a few other appointments in the next week – at the Marsden, and at St Georges/Moorfields again for her ophthalmology appointment.

For those that pray…

• GIVE HUGE THANKS THAT ELOISE HAS TURNED 4!  We have prayed that she would reach this point for years, so give thanks for the miracle that she defied the odds and has reached her 4^th birthday.
• Give thanks that Eloise is doing well physically and socially and that she loves life! 
• Pray for her health – for her seizures to be controlled (for her to not have any in the coming months),  for her hydrocephalus not to hinder her and for no shunt infections/malfunctions, for her eye-brain connection to be working well and for her muscles to continue to strengthen.
• Pray Eloise continues to develop – that she can start to learn to run and jump, that her language continues to develop, that her processing speed improves and that she can cognitively continue to learn new things.
• Pray for the MRI tomorrow – pray that Eloise tolerates the GA with no side effects (she once had lots of seizures following a GA). Most importantly, pray that the scan shows No Evidence of Disease and that the previous ‘significant scarring’ and ‘calcification’ is improving.

So to end this post, here are a few photos of Eloise on her 4^th birthday and at her party, alongside some of the words we said specifically to Eloise at her party. 

“Eloise you are dearly, dearly loved. You are absolutely beautiful, you are fun-loving with more zest for life than anyone else we know – your passion for swimming, scootering and animals is infectious. Your steely determination inspires us every day. Your humour and kindness will mean you go far. Your love for the two most important things in your life – your sister and your dog Kobe makes us smile every day.

All these people and many more know you are a warrior and a champion. Don’t ever let anything stop you. Keep fighting, keep pioneering, keep holding onto God. God saved you for a purpose and we can’t wait to see how it’s outworked. When hard days come, know that God, and we, are with you. And no matter what happens, never forget how amazing you are”