After a long time without one – Eloise has an MRI tomorrow.

Overall she’s doing really well – making progress physically and developmentally and really benefitting from all the daily and repeated interventions she receives at school and from professionals. We are so grateful for the school and a wider community that champion Eloise and enable her to thrive and be the best she can be.

A couple of weeks ago Eloise turned 6! Wow, that’s a big number! (Slightly odd because she doesn’t seem like 6 too…). Eloise had very strong ideas for her birthday and made sure we celebrated it in style – requesting a BBC Dog Squad themed party (great programme if you haven’t watched it). Due to some coincidences, the real guide dog Kika and Dr Amit from the BBC programme came to her party! It was the most amazing day and Eloise absolutely loved it (although she might have high expectations for future parties!). Thank you to Dr Amit and those involved in making this happen!

We would value prayers for her MRI tomorrow. We aren’t concerned, but also all too aware that ‘unexpected’ things crop up. Only earlier this week, Eloise had an instance that reminded us of such.

For those that pray:

• Give thanks that Eloise is doing well and has defied the odds.
• Pray for her MRI tomorrow – for the scan to show no recurrence, no change to the lesion in the pons area of her brain, that the shunt is working well – and nothing else unexpected/untoward.
• Pray Eloise continues to develop and that the long term side effects of the tumour and the treatment are as limited as possible.
• Give thanks that Eloise loves life, is sociable and teaches us all how to  make the most of each day (she has so many ideas, is very confident and doesn’t want to let anything hold her back).

As Eloise’s medical procedures have start to space out, our frequency of posting blogs has also reduced. Lots has happened since Eloise’s last MRI in October, so we thought we would share a short update of how Eloise is getting on.

Eloise is doing well. She is doing wonderfully well.

After a long season of difficult news, poor odds and complex challenges (of which there are still quite a few) – it feels like we have entered a season of hope and joy. 

School: Eloise continues to love her fabulous school, Rydes Hill, who we will be eternally grateful for the love, attention, and care they pour into Eloise every day. Eloise is broadly meeting her age-appropriate milestones and tracking progress with her peers with the help of her 1:1. This is huge and a testament to Eloise’s personal drive, the excellent input and teaching at school and prayer.

And to be candid, also a little bit of surprise – a wonderful surprise. And we count it all joy.
Going to a parent’s evening and hearing that Eloise is doing well, hearing Eloise read or memorise her lines for the School play. It’s all wonderful joy.

Unfortunately due to some unplanned schooling changes (closure of the older part of their school) Anna will be going to a different school in September and means the girls will no longer be together. Whilst this has been very disappointing and upsetting news we are incredibly grateful the girls got to spend a period of their schooling together.  Thankfully Eloise’s part of the school is continuing, including all the amazing support she has around her. 

Friends: Eloise is an extrovert and has a wonderful talent for making friends easily, whether at the park, the beach, a new church kids group, or just standing in a line. She is well-liked and loved at school and always has a story to tell (and usually told with a lot of sass and humour). This is one of Eloise’s superpowers.

Interests: Her favourite things are still swimming and horse riding. Swimming – she can now float, swim short lengths and pick up objects from the bottom of the pool. Horse riding – Eloise can now confidently do rising trot on the lead rein and recently took part in a dressage competition, run by the wonderful RDA.  

Health: Eloise continues to have regular check-ups with a range of medical specialists, including eyes, infectious diseases, oncology, brain surgery, heart, epilepsy, physio, speech and language and radiology follow-ups.

Eloise continues to be one of the smallest in her class at school (despite being ‘held back’ a year) and so we may need to revisit our endocrinology plans (i.e. think about giving her growth hormone injections soon). Prayers for wisdom, timing and for Eloises body to respond would be appreciated. 

All things being relative – Eloise is doing ‘OK’ on most other medical areas. What a wonderful line to write! With medication, Eloise has managed winter with relatively few infections and has (to the best of our knowledge) not had any seizures for a long time! Hooray.

Family: As Eloise grows and gains strength the things we can do progressively widens, including swimming as a family, walking a little further, travelling a little further and more adventurous family activities. The girls are happiest when the four of us are together.  In many ways the last few years has made us particularly close as a family unit.

Anna continues to be her favourite person in the world (closely followed by Kobe) and the girls have been richly blessed by an increasing number of cousins (14) to play with. 

Anna is doing really well, continues to love horse riding and thankfully has a lovely friendship group, many of whom are also making the transition to the new school.

For those that pray:

• Thanks – give thanks that Eloise is doing so well. For all the answered prayers. For Eloise’s thirst for life, her outgoing personality, her friends, for all things she looks forward to and enjoys in life.
  
  As we write this, we pause to remember some of the darker days and places we’ve been.
  And then we consider where we are today.
  
  What a joy and what a privilege – to see Eloise doing so well, to experience the closeness of God in distress, to be surrounded by community and prayer, to know healing and experience miracles and see Eloise, Anna (and us!) be formed through it all. 
  
• Wisdom – as we navigate endocrinology challenges, schooling changes and the inevitable logistics of two school runs etc.
  
• Protection – for us as a family as we continue with medical check ups, work out how to bring the best out of each other, encourage one another and serve together.  

For those in the Guildford area and are interested or perhaps intrigued by God, prayer or some of the reflections that Eloise’s story may have raised, our Church is running a course to explore the meaning of life and the Christian faith. For more info, see here.

Also, always feel free to ask us any questions – we like being candid and enjoy being real with how we see and experience life. 

Eloise’s scan has come back all clear – with no changes from the last scan!  There is no evidence of recurrence, no change to the lesion in her pons, and the hydrocephalus is well managed.  Hooray!  Thank you so much for praying.

Eloise has had a stream of appointments this past week at different London hospitals, but has been excellent throughout.  We are so proud of her.  And Anna has been great at putting up with these during her half term holiday.

Eloise is doing very well at the moment – when she isn’t ill, she is brilliant – full of life, energy, humour, wit and joy.  Her seizures seem under control and she is learning.  Please pray this continues over the coming few weeks – that she avoids extreme responses to infections and that infections don’t impact her neurologically.

Give thanks for the miracles that God has done in Eloise’s life – for the countless odds she has defied and for the lovely girl that she is.

Here she is waiting for her shunt to be adjusted after waking from her MRI. 
Eloise’s resilience is incredible.

Eloise is currently having her (now 6-monthly) MRI.  She has been a superstar as always, having no breakfast and today even gave herself the general anasaethic (i.e. holds the gas mask).  We are really grateful Eloise is well enough with no coughs, colds or temperature this week so she can go ahead with the scan today.  Afterward, Eloise will then have her shunt checked/adjusted by the neurosurgeon and come home later.  All she wants to do is to go to her swimming lesson this evening!

We would be grateful for prayers for the results – that it shows that she is NED (No Evidence of Disease), for the small lesion in the brainstem to not have changed (or disappeared!) and for the hydrocephalus to all be fine and well managed with her shunt.

Eloise is doing really well.  She’s loving school, has lots of friends and is learning and developing.  The school is brilliant with all the adaptations enabling Eloise to thrive – including doing daily physio, speech and language and OT exercises.  That said, it has been a bit of a bumpy start to school with Eloise being off school a lot for the first few weeks with infections. This included a short hospital stay due to her ‘extreme response to the infection’ and is then followed by Eloise working hard to try to keep up with the learning she has missed.

However, Eloise is doing well this week, so we take each week as it comes, and we are so proud of her.  She is a seriously mentally strong girl and doesn’t want to let anything beat her – nothing is a fuss for her, she just gets on with it!

For those that pray:

• We would be grateful for your prayers – for the scan today and the plethora of appointments over the coming weeks, and for Eloise to fight infection in a ‘normal/manageable’ way over the winter months.  The up-and-down unpredictability and chaos can be tricky for her, and us all to manage. 
• Give a big thanks that Eloise is doing unbelievably well considering all her challenges.

Eloise preparing for today’s scan

Today marked a significant milestone in Eloise’s life – she started school. 

Like many children, Eloise marked the occasion with the obligatory photo by the front door in new school shoes and a (slightly) oversized uniform.

Eloise was excited, proud, and was definitely ready to start – not showing any hesitation and eager to join her friends as soon as she got through the school gates. 

When we picked her up later – she had clearly had a blast and is looking forward to going back tomorrow already.

It was a remarkable, emotional, and memorable day on many levels

• The fact that Eloise is here to enjoy the day is remarkable.
• The fact that Eloise can attend a mainstream school is remarkable.
• The fact that a mainstream school is willing to provide the support, encouragement, and love upon Eloise is remarkable.
• The fact that Eloise is “ready for school” is remarkable.
• The fact that Eloise is confident and has friends she can enjoy the day with is remarkable.
• The fact that Eloise can attend school with her sister Anna is remarkable.
• In many ways, the fact that Eloise’s day was unremarkable –  mirroring that of thousands of children starting school – is remarkable. 

This is fitting for a remarkable girl – Eloise has had to fight and fight hard for so many years on so many fronts to get to this rite of passage.

The African proverb about “taking a village to raise a child’ seems apt here.  A lot of love, hours, support, care, and prayer have gone into making today remarkable.

We are so deeply grateful to so many – thank you.

There are too many people to mention by name, but we felt it right to say a special thanks to Rydes Hill Preparatory School. It is staggering the amount of paperwork, foresight, perseverance, commitment and sacrifice that a school needs to do to accept, support, and educate Eloise – Rydes Hill has gone above and beyond for us as a family to make today a reality, we are both deeply humbled and forever grateful.

Today has been a good day.

P.S. Thank you to everyone who has asked about our holiday (after Eloise was medically cleared to fly for the first time since treatment). Eloise had no issues with flying and we all had a fabulous time in Majorca. Eloise’s highlight was swimming every day – and our highlight was seeing her swim a width independently and unaided – go girl!

On Thursday, Eloise turned 5.  Another milestone – and another birthday we are very grateful for.

Yesterday Eloise celebrated it by hosting a party with 20 of her friends.  Eloise was very specific in some of her wishes for her party so it included a paw patrol bouncy castle with a slide (very important apparently), transferable paw patrol tattoos and playing duck, duck, goose. 

Eloise had an absolute blast and asked if we could host another party almost as soon as it was over, as she had enjoyed it so much.  It appears she’s already coming up with ideas for her party next year.

It was a pure delight to see Eloise having such a wonderful time, watching the way her friends play with her so beautifully, and seeing Eloise not only ‘keep up’ but enjoy playing the hostess (with the most-ess).

The party comes after a couple of months of lots of medical assessments, reports and therapy sessions as Eloise prepares to start school in September. Audiology, Ophthalmology, Physiotherapy, Speech and language, Occupational therapy, epilepsy, (we are still awaiting neurology) EHCP reviews, wheelchair service assessments etc etc. 

The reports show a range of things.  More medically-focused appointments remind us of how amazingly she is doing – not just for surviving, but how well she is doing in light of the tumour and the intensive treatment.  She’s a little star and we now have occasional days where ‘people might not notice/realise she has challenges’ (but hidden disabilities come with heaps of other challenges too).  That said, the reports and assessments are also highlighting some of the longer term challenges for Eloise.  Now she’s off treatment and has gained some strength, we have a clearer idea of her ‘baseline’ and therefore the long-term challenges. 

Without going into the ins and outs of it, we’d be really grateful for your prayers.  Eloise doesn’t fit a ‘typical category’ and there are several letters that effectively state ‘XXX is an issue but we can’t explain it with the tests we have available’.  Acquired brain injuries, particularly in developing children, are complex and are on the edge of medical knowledge and science. 

How do we feel:

• Chuffed to see Eloise get stronger and be ‘ready for school’.  We’re even amazed that her teacher used those words to us recently. 
• Proud of Eloise.  Eloise’s tenacity, determination, increasing confidence, being empathetic and being sociable really gets her far.  Another highlight is that Eloise is swimming independently for a few metres!  She absolutely loves (and I mean LOVES) swimming.  It’s an unusual journey – she struggles to run (and walk long distances), but appears to be mastering the art of swimming.  We are so proud of her.
• Grateful that the prophylactic antibiotics seem to be helping Eloise fight infection and prevent some of the neurological consequences of these infections.  She really has been much better since having been on them.
• That said, honestly it’s been a very, very full and challenging few months. On a personal level, Mel has started her own coaching and consultancy practice in an attempt to bring in some income – unfortunately she felt the need to leave the FCDO last year after several years on unpaid leave, as knew it would be impossible to go back and fulfill a role, even part-time. Side note: this has involved Mel studying for a diploma in the evenings and qualifying as a professional coach – which is pretty amazing. So far so good.
  
  That said, trying to fit even a few hours of work in a week around nursery and caring for Eloise (and Anna) has been good but proven much more logistically challenging than hoped due to short days, continual appointments that get booked at last minute or rescheduled, and needing to be off for school holidays.    
• Getting greater clarity of Eloise’s baseline challenges for the longer term is also hard.  Each report or assessment feels like a constant reality check of expectations – and adjusting our (or society’s or other’s) ideas and expectations is hard work.  It involves trying to be positive and not limit Eloise, but also be realistic and put plans in place that enable her to engage fully in life.  It’s being grateful, whilst lamenting what Eloise has to face and what the tumour and its required treatment have stolen from her.  It’s balancing ‘pushing her forward’ and being incredibly intentional to do all the ‘activities’ she needs to keep practicing (for speech and language, physio, OT, short-term memory etc), whilst also trying to just be her parents. It’s an unusual, and at times, quite lonely journey.
• Overall, we are grateful but often tired.

For those that pray:

• Please pray for Eloise’s EHCP.  We are still waiting for this to be finalised and agreed (she has an EHCP in place but we are still struggling to get a confirmation for her school place in September).  She loves Rydes Hill school, has fantastic teachers who really ‘get’ Eloise and draw out the best in her, has some fantastic friends and so we really want her to stay there with the 1-1 support in place.  It’s our expectation that she will, but it’s STILL not confirmed. Please pray this is confirmed really, really quickly and for peace for us as we keep ‘pushing’ and waiting for answers. 
• Give thanks that Eloise is growing in confidence, is tenacious, is caring and loves life.  Give thanks that she has been doing well recently.  Give thanks that she has turned 5 and the miracles that led up to this.  Pray that Eloise continues to grow into a wonderful girl who’s character radiates Jesus and that she has an abundance of life.
• For Eloise’s development and longer-term challenges.  Pray for miraculous healing for her brain.  All (well, very nearly all) of her learning and development challenges are all related to this in some way.
• Pray for continued protection for her shunt, protection from neurological implications of infections and protection from seizures.

Here she is, celebrating turning 5.

Just a little update to say that we had a call with Eloise’s neurosurgeon to get her MRI results this week. Unfortunately, for various reasons Eloise’s case wasn’t discussed at the MDT and we don’t have a formal radiologist report. However the Neurosurgeon has reviewed the scans and indicatively said it looks all clear from recurrence (yippee!!!) but it will still need the usual, full formal review in due course.

We take this as really good news as if there was a serious issue it would have been picked up. Eloise might need her shunt adjusting but we will wait to see what the radiologist thinks. We should hear back in another week or so (due to MDT meetings and Easter).

Thank you so much for praying. We are enjoying a break away in beautiful Dunster (Somerset) and both girls are having a lovely time. Eloise is slowly walking further which is great (and helpful) and she is loving her little holiday.

We hope you all have a wonderful Easter!

Eloise has been doing (in her world) really well.  We intentionally include the caveat as when people ask us ‘How is Eloise?’ – it’s often hard to know what to say.  Apologies if you’ve asked us this and we’ve stumbled with our words and struggled with a response. All things considered, Eloise has been doing brilliantly since the turn of the year (whoop! go girl). However,  if you benchmarked how Eloise is doing (developmentally/physically) against a typical 4.5 year-old (without knowing her background) then you might have quite a few concerns. 

But, most importantly, in Eloise’s world she’s doing fab and is enjoying life – living up to her name; a warrior, fighting for life in abundance!

This week Eloise has two trips to St George’s Hospital.  One on Thursday to meet an infectious disease consultant (due to her neurological instability when she gets an infection), and then one on Friday for her next routine MRI, under general anaesthetic.

We’d value prayers for her MRI.  Prayers that it goes ahead (i.e. she doesn’t develop a cough or anything this week), that Eloise is fine being nil by mouth and with the general anaesthetic (e.g. no seizures the following day) and that her shunt is adjusted ok after the MRI.  Most importantly we’d value prayers that Eloise’s scan is all clear and shows she is still in remission.  We’d also value prayers that the calcification lesion in the brainstem shows no sign of change (or ideally that it has disappeared!) and that the hydrocephalus is well managed.  In short please pray the whole thing goes smoothly and the scan is ALL CLEAR.

We are unlikely to get the results for over a week (we actually expect to get them whilst on holiday) and will update the blog when we do.

How do we feel?

Pre-MRI result weeks always induce slight low-level anxiety.  We remain hopeful but are aware that sometimes the unexpected can happen.  But overall we know that God continues to be with Eloise through this journey and are hopeful that the scan will show good news.

Unfortunately, the last few weeks have been pretty stressful generally for a range of other (non-health) reasons.  Similarly to Eloise’s health, despite these challenges we remain hopeful and remind ourselves of God’s faithfulness. We have countless stories of God’s miracles and of Him ‘showing up’ (see here and here for just a few examples) and remind ourselves of these.  We also pray that perhaps, at some point, life will be a little less unpredictable – but who knows.

At the same time, life also continues to be punctuated with amusing moments – mainly engineered or started by Eloise, who makes us laugh with her sense of humour.  Anna also thinks that Eloise is incredibly funny – which, in turn, further encourages Eloise!

For those that pray:

• Give thanks for all the miracles it’s taken to get Eloise to this point
• Please pray the MRI goes smoothly on Friday and that the results show NED!
• Please continue to pray for Eloise generally (see previous blog posts for specific requests for her general health/development).