February 2024…. An honest summary: The great and the ongoing.

Thank you so much to those who have continued to pray for Eloise and ask about her.  Sorry we haven’t written a blog for ages but we are genuinely astonished by the number of people who diligently pray for her and ask how she is doing.

Here’s a bit of an update: 

• Eloise is doing really well health-wise at the moment.  We are really chuffed as we’ve not had any unplanned hospital trips since Christmas!  She’s had a handful of seizures but they’ve been short and occurred when Eloise was under the weather – the prophylactic antibiotic she was put on might be helping, but still difficult to say for sure.  She’s had some ‘normal’ illnesses but seems to have weathered them well – including Covid just after Christmas.
• Eloise continues to have various appointments and assessments – in January this involved speech and language assessments, physio assessments, ophthalmology tests, blood tests, endocrinology tests – we are always kept on our toes.  Eloise’s speech continues to be delayed, but she’s talking a lot now (read, non-stop!) and is very confident and loud.  Physically she’s slowly getting stronger, walking a little further, and doing brilliantly with her swimming.  Her sight is ok from an ophthalmology side (they still cant explain her eyes/head looking down since surgery), but visual processing is still challenging.
• All in all, she’s making fantastic progress and we are so proud of her tenacity, her confident attitude and desire to give anything a go (she is up for anything and has very little fear!). 
• In January Eloise had an endocrinology test which involved being nil by mouth and having bloods taken every half an hour from 8am until about 1pm.  We were told to expect that the outcome of the test would very likely be that Eloise would need to start taking a growth hormone (us giving her an injection every day for many years).  But this week at an appointment at the Royal Marsden we were told the unexpected good news that the test showed that despite proton hitting that area of her brain (the pituitary and hypothalamus) her brain is currently producing the growth hormone so she doesn’t need to take the growth hormone (she might still need it in years to come, but at the moment she doesn’t).  Wow – for a whole host of reasons this is brilliant news.  Eloise has no idea that she has narrowly avoided having injections every day.   And Eloise is growing – she’s little for her age (as stopped growing during treatment) but she’s now growing again.
• Socially Eloise is having the time of her life.  She loves her friends, sister and continues to love animals.  One of the biggest highlights in life is seeing Eloise develop friendships and it’s amazing to see how she remembers everyone’s name at nursery and school and likes to give a detailed rundown of what’s happened at nursery that day.

What does life look like for us?

In many ways our life can look pretty ‘normal’.  Eloise goes to nursery, we go to church, Eloise goes riding (with the RDA), she loves going to parties and enjoys swimming lessons.  She has a full life! 

But in other ways life is just a bit ‘different’.  For example:

• Most things require a bit of thinking through in advance – often termed ‘the Eloise factor’.  The factors to consider are less than they used to be, but still require working out how she can enjoy, access, engage and stay safe.  Teachers have to do a specific risk assessment for Eloise if she goes anywhere and in some ways we have to do this all the time….
• Eloise has just been cleared to fly on a plane (yay!) but with very specific caveats, as written in the consultant’s letter – the flight needs to be in the daytime, short-haul and somewhere in Europe and somewhere with a paediatric neurosurgical centre.  We are very excited that she’s been given this approval and have booked to go away in the summer (we have spent much time googling paediatric neurosurgical centres!) but unfortunately travel insurance is very specialist and expensive for children similar to Eloise (this case £850 just for her.. after we got it down from £1,200). 
• Although Eloise attends nursery part-time, invariably once or twice a week she still misses some of her planned sessions to attend medical appointments. 
• Eloise still has her daily anti-epileptic medications and prophylactic medication.  Recently we accidentally gave Eloise one of her drugs twice (she’s on the highest dose already), which led to lots of conversations with specialists and working out what to do as it was too late to rush her into hospital to aspirate…fortunately Eloise was fine, but it was another high stress day monitoring her.
• Alongside her appointments, we have loads of exercises to do with Eloise – physio, OT, speech and language exercises. All very helpful, but it can sometimes feel like (as parents) we have lots of homework to do – all the time.
• Leaving Eloise with others continues to be tricky.  She has emergency seizure rescue medication and therefore people need to be trained to administer this – or we need to be close by.  This alone (let alone other more nuanced factors) writes off holiday clubs and other childcare.  We always need to be nearby and ‘available’ for the unexpected – particularly for a prolonged seizure, or anything that indicates her shunt might not be working properly (unexpected vomiting, confusion, balance issues etc).
• The psychological impacts of this journey continues.  Anna has been asking some deep and challenging questions regarding Eloise’s situation – we always say the truth whilst also trying to avoid her being too alarmed/unnerved.
• A frustrating thing about Eloise’s health is that it can change almost instantaneously – and concern, anxiety and stress levels can suddenly get very high (and Eloise is becoming more unnerved sometimes too).  At times everything can feel fine, then half an hour later everything is very unpredictable – and Anna even knows this, recently commenting that Eloise hadn’t been poorly for approximately 5 weeks and that she therefore expected her to be ill again, as normally it’s every 3 weeks.
• We have the privilege of meeting people in the childhood cancer community and the childhood disability community.  We discuss the challenges with getting  EHCP’s in place and the many, many complicated processes and systems. The amount of admin to support children with additional needs is phenomenal….
• And emotionally it can be an unusual journey.  We are utterly proud of Eloise and all that she has overcome. However every challenge or ‘delay’ that a medical or educational practitioner scores her down as act as a reminder of the obstacles Eloise still faces and a reminder that Eloise’s journey isn’t normal.
   
  The flip side of this last point is the amazing joy of seeing Eloise accomplish things we didn’t know we would ever see her achieve.  We know many parents will also experience this joy with their child – we just feel like we get this emotion supercharged, because things that ‘weren’t even a thing to accomplish’ for most children can be a massive deal for us (e.g. being able to balance/coordinate enough to climb a small climbing frame in a playground).  That joy is unbelievable.

So our darling Eloise continues to marvel us.  She is a superhero.

For those that pray:

• Give thanks that Eloise is doing so well, is defying the odds and living up to her name!
• Pray against seizures.
• Pray for her brain to heal.  Pray for her shunt to work well, for the ‘scarring’ and lesion in her brain to heal and disappear. 
• Pray for her development – pray for her processing speed, for neural pathways to be developed so she can continue to learn. Pray specifically for her to be able to run and jump so she can play with friends in the playground.
• Pray for the finalisation of school places next year and her EHCP.  We are hopeful that she will continue to stay at Rydes Hill (which she absolutely adores!) and that she will join the reception class, but we would be grateful for prayers that the final hurdles are smooth.
• Pray for Anna – she is processing a lot at the moment so prayers for her would be great. 
• Pray Eloise continues to love life and that she knows how much God loves her.