We would value prayers for Eloise. After last week’s blog, Eloise is again in hospital. This time, straight after Eloise doing her first nativity play we went to the doctor (Wednesday) who told us to go straight into the Royal Surrey Hospital.

After 24 hours of tests (normal urine, stool, blood cultures etc) and chest X-rays etc at the Royal Surrey, Eloise was transferred to St George’s in London. She is still there and at the moment we haven’t got to the bottom of what the issue is.

In short, something still isn’t right. Her bloods aren’t right but doctors can’t locate an infection or see many clinical signs. She’s been up and down for over 2.5 weeks and ‘hasn’t been right’ but clinically she seems a little better after having had 3 days of IV antibiotics. Last night at 9pm as we thought we were about to be discharged when we were told her respiratory rate wasn’t right and we need to stay in. It appears we still haven’t got to the bottom of everything. As we understand, more tests are now going to be done..

For those that pray:

• Please pray for our darling Eloise who again is being a superstar. Pray for her health. Pray for her to not be too bored and/or lose too much strength etc whilst in hospital. Pray for continued patience for her as ‘more gets done to her’.
• Pray for wisdom for the doctors. Pray the doctors can get to the bottom of whatever is going on. Pray for real clarity and for ‘things to make sense’.
• Please pray for Anna. The uncertainty of the past week and disruption has had a big impact – with it being so unpredictable and with St George’s so far (traffic is dreadful at the moment) she’s had lots of disruption, late nights, limited food etc. Anna wants to be with Eloise and us where she can.
• Please pray this is ‘just an infection’ that she will recover from quickly and ‘nothing else’. We don’t know what the latter is, but we’d be grateful for you to pray that this isn’t anything serious.
• Give thanks that clinically Eloise has done better for a couple of days – better than she’s been for a few weeks. Pray this continues.
• Give thanks thanks that doctors and nurses are taking this seriously and wanting to get to an answer and get Eloise well again.
• Pray for strength and resilience for us. Uncertainty, unpredictability, sleeping on hospital wards/moving around and always changing logistics is rather exhausting.

Thank you to those of you who continue to pray and think of Eloise.  We don’t write on this blog so often now that we aren’t in the acute phase of treatment but thought we should do a little update.

The last few weeks have been a little challenging.  Eloise has had a couple of more prolonged seizures, leading to a short hospital admission.  They started off as atypical absence seizures and then continued as partial seizures (they don’t look like ‘seizures’ like you might imagine, so the good thing is that other children wouldn’t notice – she just looks poorly to them) but they are unfortunately quite serious/risky, in both the short and longer term.  Having not had any seizures for approximately 6 months over the summer it appears autumn and infection-season have come with vengeance.  It is very clear that infections are impacting Eloise.

Last week Eloise also had another unexpected hospital admission and stay, which included an urgent CT scan done at 4.30am (to check her shunt wasn’t malfunctioning/infected).  Without going into the complexity of different aspects and symptoms, Eloise is proving not to be a ‘typical case’ with most things.  She is unable to consistently regulate her body temperature (due to proton hitting the thalamus/hypothalamus), and last week her observations in hospital were quite unusual (very high heart rate and blood pressure initially without a clear cause/temperature).  After various tests and antibiotics Eloise is now home and now doing much better.  Another unpredictable and unnerving few days, but she’s ok – for now.

That said, we try to keep ‘the show on the road’ so when Eloise is well she’s been loving nursery, seeing friends and playing.  She continues to be incredibly sassy and funny.  A very funny conversation we had with her recently, somewhat sums up her little character.…

Mummy ‘Eloise What would you like for Christmas?’
Eloise ‘A horse’
Mummy ‘Urr, I’m not sure we can have a horse.’
Eloise ‘A donkey?’
Mummy ‘I don’t think we can have a horse or a donkey, as where would we put a horse or a donkey?  A horse or a donkey need a stable and field.  So what else would you like for Christmas?’
Eloise ‘A field.’

We would be grateful for prayers for a few things:

• For us/Doctors to get a better understanding of how infections impact Eloise and what we can do to prevent infections impacting her neurologically.  What is a ‘normal infection’ for many children seems to have much wider ramifications for her.  We know her immune system, blood-brain barrier, endocrinology system and brain have all been impacted by her tumour and treatment, but we’d be grateful to get to the bottom of some of this to try and see if we can prevent/treat  this.  We really don’t want the infection yo-yo to be the new normal for Eloise – it impacts her quality of life, development and education (and also has some big risks).
• Eloise has a range of appointments coming up – she’s starting a block of physio this week.  Please pray this increases her strength.  Even just the last week of illness and hospital stays has set her back a bit. 
• For Eloise’s EHCP and school placement for next year.  We’d like Eloise to stay at Rydes Hill where she is so happy, has wonderful friends and teachers, feels loved and has come alive.  Please pray that this is possible.
• Pray for overall health – seizure control, her processing speed, for protection for her shunt/hydrocephalus.
• Give thanks that Eloise continues to love life and is incredibly determined.  Give thanks that she has defied the odds, is able to celebrate this Christmas and lives up to her name!  We are so grateful that we get to do life with this incredible, inspiring little girl – even if it comes with challenges.
• Please pray for Anna.  Anna is incredibly resilient with the unpredictability of our life, but it does impact her – she hates Eloise going into hospital and not knowing when she will be out.  Please pray for peace for her.
• Please pray for us.  It’s hard to capture the challenge of unpredictability, weight of responsibility and anxiety of ‘what is going on?’. Life isn’t as challenging as it once was, but its certainly not as calm and consistent as we’d like.  We try to keep the ‘show on the road’ and keep life as normal as possible but some days the stress levels can be a little higher than we’d like them to be. 

This is what a 4.30am CT Scan looks like…

This afternoon we met with Eloise’s neurosurgeon at St George’s who informed us of the great news – Eloise’s MRI and CT confirmed that there is No Evidence of Disease.  She continues to be cancer free. 

Furthermore, the scans confirmed that the ‘lesion’ is microangiopathy/calcification.  It remains right in the middle of Eloise’s brain stem but hasn’t changed.  The MDT concluded it is probably a result of proton and will likely remain there.  The neurosurgeon will continue to monitor it during the scans, alongside her shunt – which continues to work well.

Eloise’s endocrinology appointment showed that she is expected to need growth hormone, but a further, longer test, will be needed first (which will happen in January). 

How do we feel?

• Relieved that the CT and MRI confirm what we had all hoped, and that there have been no changes to the calcification. 
• Appointments often remind us of how well Eloise is doing.  Today we were reminded by the neurosurgeon how technically complex Eloise’s surgery to remove the tumour was, and they now use her as a neurosurgical case study.  These conversations remind us of where she started – ETMR high grade brain tumour with awful prognosis in an ‘inoperable’ location.
• Chuffed that Eloise is doing well. She’s integrating into class well and has quite a full life of nursery, church, swimming lessons, riding with riding for the disabled, parties, friends and her dog! (Alongside juggling her appointments – which can result in some interesting variety and dichotomy)
• Eloise does seem to be neurologically impacted when she gets an infection (eg absence seizures or other neurological symptoms), which means the winter season is harder, but overall Eloise is doing well.

For those that pray:

• Give thanks that Eloise is doing well and that her scans show she remains CANCER FREE!  Give thanks for the remarkable miracle it is that she is with us and enjoying life.
• Pray for Eloise’s continued health.  Pray for her to cope with infections this winter – for protection from seizures and other neurological challenges, for her immunity to build and for her to get stronger.  Pray for her continued development – for her language, coordination, balance (she cant run or jump) and processing speed. 

The start of the new school year has gone wonderfully smoothly; Anna has settled extremely well in her new school and is loving being at the same school as Eloise. Eloise is enjoying seeing all her friends again and continues to make progress in her learning and development. Her energy levels have significantly improved since a handful of months ago and her confidence is growing. 

She’s enjoying ballet at school (and sometimes insists on teaching us ballet which involves us dancing around the kitchen), going to church and just her little life.  It’s lovely to see her social, comical and determined character come through.  What a delight and privilege it is to see children grow up and develop.

Eloise continues to have lots of appointments and support, both within nursery and at home.  One new highlight is that Eloise has just got accepted into the local Riding for the Disabled (RDA) group, and wow, did she love it!  Her confidence and natural ability shone through and it looks like she is hooked.  The RDA were so incredibly welcoming, treating her with such dignity, respect and just ‘getting her’ and speaking to her at her level, helping Eloise to come out of herself and feel confident.  She jumped on the horse and loved every minute, and didn’t want to leave. These moments are so special and hard to quantify.  Living with the impacts and complications of Eloise having had a rare brain tumour can make for a very lonely journey, at times. Therefore, when we have experiences (like the RDA) where people ‘get’ Eloise it just makes such a difference to how she and we all feel.

Over the next few weeks, Eloise has lots of appointments – most critically next Monday (9^th October) Eloise has both her MRI and CT scans.  The MRI is a routine monitoring scan, but the CT scan is additional this time to better assess the lesion in the brainstem (thought to be calcification) that has been seen on previous scans and last time was seen to ‘be brighter/have changed’. We will have follow up neurosurgeon and oncology appointments to discuss the scan results.  In addition Eloise has an endocrinology appointment at the Marsden next Wednesday (11^th October) during which it is expected that we will discuss whether Eloise needs to start additional treatment such as growth hormone. 

How do we feel?

Most days we feel utterly privileged to see Eloise and Anna grow up and delight in Eloise’s improvements.   She really is a lovely, kind and sweet girl.

Other days we become more aware of some of her challenges.  When Eloise is slightly under the weather/poorly or tired her challenges become more acute.  The recent neuro assessment in Manchester highlights that on many, many levels Eloise is doing great, but there are challenges, such as with visual perception/processing. 

We feel relatively peaceful about the scans next week at this point, but know that the next few weeks might be a little tense as we await results etc.  It’s never easy to think that despite everything she’s been through, there is a ‘lesion’ in Eloise’s brain – which raises lots of unknowns and uncertainties as nothing can be done about it (as far as we know at this stage).  But clinically Eloise is doing well so we remain relatively peaceful, and we think back to the remarkable miracles that have taken place to get Eloise to where she is now.  We pray that the God that has been with us and her throughout this journey, continues to be.

For those that pray:

• Please pray for the MRI and CT next Monday.  Pray for Eloise going under general anaesethic again (she’s on the list for near lunchtime so it will be a long morning!).  Pray for the results – that there is No Evidence of Disease (!), no hydrocephalus and nothing else alarming.  Pray against any seizures following the general anaesethic (as has happened before).
• Pray that the lesion has remained stable or disappeared and/or that we get clarity that it is nothing to worry about/ problematic going forward (this feels quite a big ask…).
• Pray for peace for us and both girls.  Stress levels often rise around scan time, so please pray for calm and peace in our household.
• Pray for Eloise’s endocrinology.  Pray for wisdom around the growth hormone decision.
• Pray for Eloise’s continued health and development.  Pray for her seizures to be non-existent (we haven’t seen any for months!), her speech, strength, mobility, processing speed, visual processing all to improve.  Pray for God to restore her body and brain.  Pray that she will be proud of who she is and for the miracles already done in her life.

It’s been a while since we last posted and, in that period, Eloise has been doing wonderful well. Eloise’s speech and visible strength continue to slowly improve, and she is increasingly able to integrate into a more ‘normal’ life for her age. For example, she can now get around most soft plays independently and has recently started swimming lessons (where she can swim with just a noodle).

It has been an eventful summer for us all – but thankfully, in the fun sense of the word! We have enjoyed time away seeing family in Chichester, Devon, Durham and London. Been for a week’s holiday abroad (!) in France (Eloise is still unable to fly but Euro Tunnels are fair game). The end of our time in France was especially magical, as a wonderful and generous charity (Kids Cancer Charity) organised for us to go to Disneyland as part of the Disney Wish programme.

This involved Eloise having a special lanyard that enabled us to enjoy rides without queuing, meet Disney characters and essentially be treated like VIPs. It was a once-in-a-lifetime experience that was simply amazing. Eloise’s highlights were a personal meet and greet with Anna and Elsa, going to the Disney shows and the Dumbo ride.

We are so grateful for Kids Cancer Charity and Disney Wish Programme for making this possible and for treating us all with such love and genuine warmth.

We are currently back in Manchester, for Eloise to have an assessment at The Christie Hospital/Proton Beam Centre to monitor the long-term neuro effects of her treatment. Eloise continues to have a variety of regular appointments and check-ups with all her specialist experts and is currently being re-vaccinated for all the standard immunisations.

Eloise’s next MRI (and CT) scan is booked for the beginning of October, which we pray will continue to show No Evidence of Disease and provide confirmation that the ‘calcification lesion’ in her brain stem is nothing to be concerned about and is not changing/getting bigger.

For those that pray:

• Give thanks that Eloise is making developmental progress and that we have had enjoyable and fun-filled summer holidays, with lots of precious memories with both Eloise and Anna.
• Please pray that Eloise learns to run and jump and can continue to expand her vocabulary, comprehension skills and processing speed.
• Eloise’s assessments – including the one tomorrow at the Christie Centre – for protection against the expected long-term impacts of her treatment and that Eloise would continue to defy the odds and astound us all.  
• Please pray for Anna as she moves schools next week to be with Eloise.
• For Eloise to continue to show No Evidence of Disease, that the calcification lesion doesn’t change/get bigger and that her seizures are controlled.

Last week, whilst putting the girls to bed, we had a call from Eloise’s neurosurgeon at St George’s.  He was phoning to go through Eloise’s MRI with us in more detail.  He confirmed that Eloise remains with No Evidence of Disease and that there was no sign of low or high pressure/hydrocephalus, but said that the scan showed that Eloise had signs of calcification.

This area with calcification has been seen on previous scans (we’ve not actually seen it on a scan – just verbally heard), but the MRI a couple of weeks ago showed that the calcification lesion was ‘brighter’ or of higher intensity than previous scans. It looks like it is ‘changing’ slightly. Apparently, after lots of discussions with the radiologists, they don’t think it’s grown, but they do think it is ‘brighter’.  It is in the middle of the pons area of her brain stem and is 7mm (so small, but definitely there).  There is no chance of it being removed without it causing unnecessary and significant damage due to its location in the brain stem.  And no one really knows if it will, or if it is, causing any of Eloise’s challenges. 

Calcification like this is apparently very unusual in children. The working assumption is that it has been caused by treatment (possibly proton, but it is difficult to attribute causality). The radiologists are confident the lesion/abnormality is calcification and not a tumour by how it is presenting (there’s some more technical stuff in here, but we will save you from that!) but it is unusual, and it looks like it might be changing/becoming ‘brighter’. 

Consequently, when Eloise has her next MRI (now in 4 months, slightly longer than 3, so yay!), they will do a CT scan at the same time as the MRI, as a CT scan shows up calcification clearer than the MRI – then the team will have two scans at the same point in time to compare and present before MDT.

Whilst this is all rather technical, we have put it out on the blog for a few reasons – firstly for prayers, secondly as we want to be honest about the highs and the lows of this journey, and thirdly as you never know if someone might have come across this before.  So far, it does appear unusual – but Eloise has had a very rare tumour, in an unusual location, and has had a variety of forms of new treatment!

At present there is no treatment for this calcification lesion.  The hope is that it will just ‘sit there’ and not change… but nobody really knows.

For those that pray:

• Give thanks that despite the abnormality, Eloise remains with No Evidence of Disease (ETMR cancer).
• Please pray this calcification lesion doesn’t get any bigger/change or cause Eloise any issues.  Pray that in future scans it even disappears (this feels a bolder prayer, but God’s done much bigger in this journey already)?!
• Pray for Eloise’s brain to be restored and healed, and for it to be protected from the long term effects of the cancer and her treatment.  Pray for neural pathways to be developed and for Eloise to develop and thrive!

PS: We left out the ‘how do you feel about this’ bit as … we’re not really sure how we feel about this. We keep plodding, praying and loving on Eloise & Anna

On Wednesday afternoon we received the fabulous news that Eloise’s MRI came back clear – with no sign of recurrence or metastasis or hydrocephalus!

We certainly let out a sigh of relief when meeting with the oncologist and receiving this news.  Whilst we try to remain calm and confident ahead of scans and their results, underlying nerves are clearly there.

This week we had a lovely friend from the USA stay and as we drove to the Royal Marsden for this appointment we were chatting in the car and commenting how lucky we are that Eloise has had access to the Royal Marsden (Europe’s leading cancer hospital).  But we were reminded of the desperation of Eloise’s situation a couple of years ago when our friend commented that us accessing the Royal Marsden is a bit like accessing St Jude’s in the USA.  We remarked to her that we had actually got a second opinion on Eloise’s treatment from St Jude’s and they had said that very little could be done.  I’ve just dug out the email and it say’s ‘Unfortunately, we have not been able to find a curative treatment option and the overall prognosis for children with this tumor is very grim’.  Yet here Eloise is, defying this prognosis and not only being here with us – but being cancer free!  I suppose this reminds us to never, ever give up.  

And here is a little photo of our superhero girl in a T-shirt she was given for her birthday. 

The meeting with the oncologist also let us update her on how well Eloise is doing.  She has grown in height (hooray!), she is becoming more and more chatty, and last week completed her 3 races in her first sports day!  A few months ago Eloise hardly walked outside much, and here she is enjoying her sports day. It’s hard to explain to Eloise how proud of her we are, that she is just IN THE RACE and completed it by herself (unaided) – that she has had to overcome so much to just be there and to finish it.      

Also last week Eloise had her ophthalmology appointment at Moorfields at St George’s.  This was hugely encouraging.  Her sight has significantly improved.  There are still a few things that are still to be investigated as they are ‘paradoxical’, but Eloise could see all the images and answered them in a ‘normal range for her age’ and hence, this is a massive improvement.  Furthermore, the retinal pigmentation seems to have gone.  Yes!

For those that pray:

• Thank you that Eloise is ETMR cancer free! Give thanks for all the miracles and the pioneering treatment Eloise received.  Phenomenal.
• Give thanks that Eloise is developing – please pray this continues and that she can ‘catch up’ a little with her peers before she starts school in Sept 2024
• Give thanks that her eyesight has improved
• Pray that her hydrocephalus continues to be ok and that her atypical absence seizures remain controlled/non-existent!

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”