After a low-key few days where Eloise has been quite low energy, last night we made it to Appledore, Devon.

We are so grateful to be here. Thank you to Mel’s wonderful aunt and uncle for letting us use their place. It has a wonderful view, so even if we don’t manage to do much, we can see the estuary and boats and the girls love seeing the sea.

Eloise has had a bacterial infection all week, so that’s not been fun, in addition to her chemo side effects…. But she’s ok and seems to be getting marginally better. Most importantly she is pretty content. She still rarely complains about things.

We are also massively grateful to the Royal Marsden for organising shared care with the North Devon District hospital (so Eloise has open access if she needs it whilst on holiday), and also to the community nurses for doing two extra visits so we can go on holiday. Everyone has done what they can to enable us to get away for a few days. How kind of them all.

Eloise doesn’t actually know what a holiday is. Our last holiday was to Wales last July when she was just 13 months – so she won’t remember that. Every other long journey for her since then has been hospital/treatment related. But she has clearly got into the spirit and Anna has been explaining what ‘holidays are’. She clearly picked up the excitement and kept saying ‘holiday’ enthusiastically on the journey!

How do we feel?

So happy to have a family holiday all together – just for us. It’s quite emotional to think we’ve made it to a family holiday.

Feeling somewhat mad that we have come – 8 medications and types of chemo to administer multiple times a day (all needing preparing in different ways), NG feeds and lots of equipment, plus ‘keeping a distance from people’ so we can hopefully avoid any hospital trips. We hope all will be well this holiday and Eloise won’t need to go to hospital.

Grateful to Mel’s aunt and uncle for their place, and to all the medical staff that have made this holiday possible.

Sometimes I also wonder if this is our last/only holiday – will Eloise make another one?! We hope and pray that Eloise will continue to defy the odds and that we will have many happy family holidays for years to come. But we know that for us, we don’t know if we can expect that.

For those that pray:

• Give thanks we made it on holiday. What a blessing.
• Pray for protection against the range of things that could cause a hospital admission on holiday.
• Pray against relapse. Whilst Eloise’s last scan said she was NED we know that battling a grade 4 ETMR brain tumour is a long battle… We need miracle to continue for many years.

Eloise was discharged from hospital yesterday and is happy to be home.  She is very up and down with tiredness (it’s very unpredictable – one day she is tired, the next she has more energy), and today she has mainly just wanted cuddles.  We have Mel’s brother and sister-in-law staying whilst they have some house renovations done, and they have brought their cat ‘Boris’ – who Eloise adores, so Eloise is in her happy place!  Eloise’s two favourite cuddly toys that have been to every surgery, scan, chemo, GA etc are ‘Raa Raa’ and ‘Boris’ (a soft cuddly cat, that looks like Boris) are pretty famous with Doctors and Nurses 😊  

Eloise’s appetite has returned a little bit, but as she’s lost quite a bit of weight over the past few weeks and is still eating less, so she’s having even bigger NG feeds at night.  She’s also having one of her oral agents twice daily, in addition to her other medication.

We today chatted with the proton oncologist/radiologist, who reminded us that it is early days in terms of her scans/being NED.  The next two scans (they will be approx. every 3 months), will be crucial.  He also said that Eloise’s tiredness could continue for months – even without having the chemo that she is having. 

How do we feel?

• Constantly ‘winging it’.  I just had a call to say one of Eloise’s bacterial tests came back positive, so it’s another set of antibiotics – hopefully these can be oral and not IV (and therefore at home and not in hospital).  A second trip to our local hospital already today…
• Grateful that Eloise had her first dose of intrathecal topotecan and is ok.  Grateful that she had it in the UK.
• Vaguely hopeful that we might go on holiday to Devon on Friday.  We are planning for community nurses to come in the morning, so we can go for nearly a week in time to get back for various appointments etc.  We have to time journeys around community nurses and meds.  But we take one day at a time and are staying relaxed about it.
• Aware its going to be a long, slow, challenging few months/year ahead.
• Continually aware that cancer sucks…  paediatric cancer sucks.   Brain tumours are beyond awful. And there is no clear ‘end’, and the treatments lead to long term effects that the children, if they survive, have to live with for years to come.  There needs to be better treatments.

For those that pray:

• Give thanks that Eloise is out of hospital and is ok.  Give thanks that she didn’t have any seizures and is home with Anna (… and Boris).
• Pray for Eloise to have energy, despite the longer term proton affects, and that she tolerates this new maintenance chemotherapy and isn’t too exhausted from it.
• Pray that we are able to care for her well –  that we are able to go at her pace, care for her in the way she needs, whilst also doing things with Anna.
• Pray that somehow, we might make it to Devon for a few days, with no hospital stays 😊

Thank you for those of you who prayed for Eloise yesterday. She had her first intrathecal topotecan chemotherapy yesterday and also started the other agent that she will take twice a day for the year. She will start the final oral chemo drug in a couple of weeks.

Unfortunately yesterday afternoon after the intrathecal chemo, Eloise developed a temperature and has been very very fatigued and her appetite has plummeted. She’s ok otherwise (very very thankful for no seizures!) but is on IV antibiotics for 48 hours and being monitored. So we will be staying in the Marsden and won’t be going home tonight. We don’t know when we will be back home, but are hoping Eloise picks up and recovers soon.

How do we feel?
Very grateful that Eloise has received this treatment in the UK! If this had happened whilst being apart in different countries (as were the alternatives), this would have been very challenging and upsetting.

Disappointed that she needs to stay longer – but equally knowing that this is all ‘normal’ in the cancer/chemo journey. Eloise could also pick up an infection anytime and it would also lead to a hospital admission.

Very grateful that we have stayed in the Marsden and for their excellent love and care for us all.

For those that pray:
Pray Eloise recovers very quickly and that the side effects are just minor and short lived. Give thanks for no seizures or other neuro issues, and pray this continues.

Pray Eloise isn’t too tired from the oral agent she started yesterday – tiredness is an expected side effect.

Pray for Anna as she will be disappointed and it will again be unsettling for her – bringing back lots of memories of the uncertainty of the past few months. She’s desperate for Eloise to just be better, for Eloise ‘to end treatment’ and for her to be around – and for consistency

Tomorrow morning (Thursday 12th) Eloise starts her first cycle of her new maintenance chemotherapy. She will have her first intrathecal topotecan via lumbar puncture in the morning at the Royal Marsden and will stay in for monitoring until late Friday (all being well). She will then return home to recover and will take daily oral chemotherapy ‘inhibitor’ drugs, and will have weekly bloods and tests. This will then be repeated 12 times for the next year (each cycle approx 28 days).

We would be grateful for your prayers tomorrow morning and for the following 30 hours – for very limited side effects, and particularly for Eloise – no seizures. The chemotherapy is being given directly into her brain and spinal fluid so please pray it does what it needs to do (kills any sparse cancer cells) and has very, very limited side effects. As intrathecal topotecan has not been given to anyone else in the UK before (I think Eloise deserves a certificate for that!) it’s hard to know the expected side effects – and each person reacts differently. They will be using Eloise’s case for evaluative purposes, which we of course support! We’ve agreed for her case being used in as much research as it can be – research into ETMR treatment (actually paediatric brain cancer) etc is so needed.

Today we also met with Eloise’s wonderful epilepsy consultant. It was a helpful meeting, but also a reminder that we need to do our best for Eloise to ‘keep clear of people’ for the next year whilst she’s severely immunocompromised (from high-dose chemo, proton and now monthly chemo). We know this, but sometimes it’s good to be reminded – it’s a hard balance trying to live a resemblance of a semi-normal life (especially as things open up post-restrictions) but also trying to shield Eloise from infections that could cause big complications for her. She’s done astonishingly well to get this far with hardly any infection.

How do we feel?
A little apprehensive – just praying that tomorrow and the next day go well and that there are limited side effects. Praying that this treatment is the right treatment and keeps Eloise cancer free.

Very grateful that Eloise is having this treatment in the UK!

Encouraged as Eloise is a bit less tired and stronger this week.

For those that pray:

Pray for Eloise as she has the first intrathecal chemotherapy tomorrow. Pray for her as she’s nil by mouth and has the GA. Pray for the Dr and nurses involved. Pray the chemo does it’s job.

Pray Eloise has very, very limited side effects from the intrathecal chemo drugs. Pray against any seizures. Pray for protection. Pray she tolerates the chemo well so she can come home on Friday evening – As Anna prayed today “please Jesus may Eloise come home from hospital after one night”.

Firstly, apologies for a long post….there is a lot to catch-up on.

How is Eloise?

Eloise is doing well but has definitely become more tired, lethargic and ‘dozy’ (often meaning she’s walking dozily and tripping).  We’ve been told that this is likely to continue for a few more weeks and that she is roughly at the ‘peak’ of the tiredness from the proton beam therapy.  Whilst having proton she was tired from the daily GA – she is now tired from the effect of the proton beam therapy.  This is a little tricky to manage as we are wanting to do some fun things as a family between treatment and whilst its Anna’s summer holiday, but Eloise’s energy is definitely up and down (and very unpredictable).  And unlike an adult who is able to articulate how she is feeling, we are having to somewhat guess and try to adjust accordingly. 

Eloise also continues to have a few issues with her eyes looking slightly upwards, alongside her occasional sensory overload challenges, all of which we will continue to work with specialists on (as much as possible) and pray that these things improve as her brain calms from the proton swelling and she gets stronger and stronger.  Fortunately these are relatively mild on the scheme of things, and she is still just quite weak.   But despite this, Eloise is eating well, always trying really hard at whatever she does and continues to enjoy her days out of hospital and being with Anna!

Complete remission

Yesterday we met with Eloise’s oncologist.  It was wonderful to hear the words that Eloise is classified as being in ‘Complete remission’! Awfully, the vast, vast majority of  ETMR patients never hear those words as it is just so aggressive (and that’s including many with tumours that are much more ‘operable’ than Eloise’s was).  We feel so unbelievably blessed that Eloise has got to this point.  Several months ago, we only prayed in desperation that a miracle would happen – that somehow a surgeon would be able to remove the ‘inoperable’ tumour’, and that Eloise would be one of the very, very few ‘lucky ones’ to one day say she is NED (with No Evidence of Disease).  Thank you Jesus – what a miracle.  Thank you to all those that prayed.  Thank you to the vast numbers of people involved in Eloise’s treatment and journey – most notably the superb oncologists, neurosurgeons, epilepsy consultants, junior doctors and registrars, nurses, caring staff, community nurses…the list goes on and on.

That said, because this brain cancer is so aggressive, and so little can be done if Eloise relapses, we are also conscious that the fight is far from over… She is at a very high risk of relapse for another 18 months- 2 years (until she is about 4).  So we pray that the miracle that has started, continues!

12 months of Maintenance chemotherapy

With the oncologist, we went through the 12 months of maintenance chemotherapy – to try to ‘maintain’ Eloise being NED and keep the cancer away.  We went through the practicalities, side effects, risks and plan for the two drugs that Eloise will take orally each day, alongside the monthly intrathecal topotecan.  She will have weekly bloods and liver tests, alongside many of her other very, very long list of appointments.

Eloise is the first child (and probably person) to have intrathecal topotecan in the UK – they have used topotecan before on adults – just not directly into the brain/spine.  The expected side effects seem acceptable, but some of the risks were again hard to take in and stomach (some of which are very severe and lifelong).  Fortunately the chances of these risks are relatively small, and therefore as the global ETMR experts strongly recommend this approach to try to reduce the chance of relapse and increase Eloise’s chance of survival, we feel peaceful about doing this (and had pushed for this as we desperately want to do everything we can to increase Eloise’s chance of survival).  Consent meetings are always tricky, even if you really want the treatment – it’s another stock-take of the risks, and we know these aren’t just theoretical risks – they do occasionally happen to some people! 

For Eloise the greatest risk is probably from big seizures and other neuro issues (e.g. neuropathy) from the intrathecal topotecan.  These are likely to be evident quickly after the intrathecal topotecan.  Other risks include meningitis and swelling in the brain.  So please pray against this!

We’ve just been told that Eloise will start her first round of this chemotherapy on Thursday (12^th August).  She will have the intrathecal topotecan via a lumber puncture (under GA) and will be in the Marsden for at least 24 hours to monitor for any side effects. 

How do we feel?

To be honest, a whole host of emotions.  It’s actually quite a tricky time:

• We are overwhelmingly grateful that Eloise is NED, but also sometimes feel ‘survivors guilt’.
• We’ve started to think about the past year and how traumatic it has been – but know that it’s far from over either. 
• We try to do some fun things – but then realise that life is far from ‘back to normal’.  We will never return to the ‘normal family life’ and the options we had before – and are working out how to embrace the phase we will now find ourselves in. 
• We are looking forward to being at home more – but conscious that having significant chemo treatment, whilst spending more time as an outpatient also comes with more responsibility. 
• And we are also conscious that this is a very long battle and that Eloise (and we) will live with the side effects of all of this for the rest of her life (shunt, risk of seizures/having epilepsy, other side effects from surgery, high-dose chemo and proton treatment).  She is doing amazingly well, but Eloise still has massive challenges to face every single day. 
• We are so proud of our wonderful girls.  Eloise never gives up – she always tries, tries and tries again.  And Anna is the most caring, responsible, kind and wonderful sister Eloise could have.

For those that pray:

• Give thanks that Eloise is NED and that she can access maintenance chemotherapy in the UK.
• Pray for Eloise as she begins the new chemotherapy regime next week.  Pray for protection from the risks and side effects.  Pray against seizures and any severe reactions.  Pray the chemotherapy does what it needs to and keeps the cancer away. 
• Pray that Eloise gets stronger, that her eyes are ok, that any sensory issues improve, and that somehow this next year, despite all the treatment and appointments – she can have life in abundance.

Today we had planned to see some friends for a walk. Unfortunately just as they were about to arrive at our house, Eloise had started to follow Anna up the stairs and fell down a few stairs. She unfortunately immediately went very pale, was ‘out of it’, just wanting to sleep and then vomited. It was a bit scary/worrying.

So we had another day in hospital – this time in the Royal Surrey getting Eloise checked out. She seems fine and much better after being sick, and it appears that the sickness was from shock rather than anything more serious. We are home again several hours later and are just monitoring her.

That said, we’d be grateful for prayers that everything is ok – from a surgery, shunt, seizure and platelet perspective (fortunately her platelet count is relatively ok at the moment). Any bang to the head for Eloise is firstly more likely due to her condition (for various reasons) and secondly quite a lot more complex if she does!

How do we feel?
Very stupid and awful to be honest! Having had the great news of NED yesterday, this really did feel like an awful blow… We had a stair gate up until recently, but because Eloise was still relatively weak she didn’t climb the stairs. She’s now getting stronger and so is now attempting to do more… and we felt dreadful that we weren’t watching her for that 30 seconds and that the stair gate wasn’t up. It now is again!

It’s also a reminder that we just have to watch her so much – she is walking around but will very frequently suddenly become very tired, have dazy moments, lose her balance, blank out etc. And we were told this week to expect this even more over the coming weeks too – that the proton tiredness can have a delayed affect.

In a bizarre way there was a plus side – today was the first time Anna was allowed in the hospital with Eloise. So Eloise could show her what hospital life is like – showing her obs, a stickman, how to move the hospital beds up and down etc. In that regard it gave Anna a real-life insight into hospital – not just what she’s heard.

For those that pray:

• Please pray for Eloise to be ok – that she’s ok over the next 24-48 hours and that there are no problems caused by the fall. Pray for protection for her little brain.
• Please pray for Anna. Anna was quite upset by the situation and has had to deal with too much drama and too much trauma over the past few months.

Four life changing words.

This afternoon we got a voicemail from the Royal Marsden CNS nurse to inform us that they had reviewed Eloise’s  MRI from Wednesday and …

“The scans are fine, there is no evidence of disease that we can see… so just to confirm, there is no evidence of disease and we are happy with it”

This won’t be a long post as we wanted to send a quick update to let all those that have been so faithfully praying for Eloise know the wonderful news. We are so grateful. Thank you.  If you’d told us in January that we could be in this position at the end of July, we would have done anything to be here….the odds have just been so small. 

It’s still a long road, and the next two years will continue to be crucial – and Eloise will need to continue to defy the odds.  As Mel’s Mum aptly described it – it’s like Eloise has to successfully cross a motorway each day – and survive.  And so far she has done.  We are just so grateful.

We will meet with the Oncologists on Wednesday to go through the scan and next steps for the year of maintenance chemo in more detail and we will post further updates in due course.

Thank you Jesus for Eloise Zoe and thank you for no evidence of disease.

How do we feel?

There are almost no words to cover the emotional rollercoaster of anxiety, stress, relief, joy, and gratitude . We are so grateful to everyone who has helped us get this far and are so unbelievably proud of Eloise.  Emotions vary each day – but today we are relieved and celebrating.

For those that pray
Give massive thanks that there is No Evidence of Disease –  pray that this stays the case for years to come….

The last few days have been a bit up and down.  After a several hour GFR Kidney test in the Marsden on Thursday, we were first told there would be a slight delay (a couple of weeks) in Eloise having her MRI and starting her new phase of chemotherapy – making us feel a little subdued and slightly anxious to start her next phase of treatment.  But today we were told a change of plan, and Eloise will have her MRI this Wednesday.

We spent today down at the coast (Mel’s mum’s house is near West Wittering) for an impromptu trip – as we thought we weren’t going to have any appointments until Thursday and Anna is now off on her school summer holidays.  But a call this afternoon changed the plan and we will have Covid tests tomorrow at 9am at St George’s in Tooting, before Eloise has her MRI by GA on Wednesday morning (~10.30).  The rest of the week is also full of appointments – community nurses and bloods followed  by an audiology appointment at St Heliers on Thursday, then a meeting with our oncologist at the Royal Marsden on Friday to discuss the scan and the future treatment. 

How do we feel?

• We are grateful for a fun-filled sunny day today – for managing to find a way to keep both Eloise’s hickman line and NG line safe from sand (using clingfilm, wearing two swimming costumes simultaneously and leggings) and for special times together as a family. Our life is semi-chaotic, so we have to grab the opportunities when the arise as plans continually change.
• Always on guard – Eloise has had a couple of very slightly odd turns.  It’s so hard to tell if these are sensory issues, very minor partial/absence type seizures (they are different to her previous seizures prior to surgery), exhaustion and/or recovery from all her intense treatment.  She’s so little and can’t explain much and it’s hard being her parents as we are her only advocate to identify if something is wrong.  And it’s also very anxiety inducing knowing that sometimes the ‘very small thing can be the big thing’ (her initial symptoms were very, very mild and took months to diagnose).
• Anxious about the scan (scanxiety?!).  This is another Big Week in Eloise’s journey.  We know this scan is absolutely critical.  So many ETMR patients relapse whilst on the treatment Eloise has had and we are just praying the high-dose chemo and protons have obliterated any of the remaining cells and that there is no evidence of relapse, spread or cancer.  It’s been the longest time so far between scans, so we are just desperately hoping and praying for it to be clear.  We try to stay positive, but on some days it really is hard.  We are so desperately sad for other ETMR children who have relapsed and/or where treatment is no longer an option.  We can’t get over how awful this cancer is…

For those that pray:

• Pray for Eloise’s scan on Wednesday.  Please pray for it to be absolutely clear.  Pray for our nerves/peace for us.  Pray for Eloise being nil by mouth until late morning.  Pray for her shunt to be easily reset afterwards (this was quite a saga once in Manchester and involved numerous attempts, staff, several X-rays etc).
• Pray that Eloise can start her new maintenance chemotherapy protocol really quickly – that there would be very limited side effects from both the intrathecal chemotherapy and oral agents.

The Royal Marsden Drug’s and Therapeutic committee unanimously approved the proposed maintenance drug combination for Eloise! This is unbelievably good news and an incredible achievement by our wonderful Oncologist and the Head of the paedatric unit (who presented the case at the Committee). To put it into context, it means that Eloise will:

• Receive a bespoke combination of drugs for her tumour, as recommended by the Canadian ETMR expert – she will be the first child to ever receive this combination of drugs on the NHS.
• Receive the topotecan drug intrathecally (inserted directly into her Cranial Spinal Fluid, via lumbar puncture) – she will be the first child to ever receive treatment using this method at the Royal Marsden.

This chemotherapy will be for 12 months.

We feel so incredibly indebted to a number of outstanding oncologists (In Canada, USA, Spain and especially, those at the Royal Marsden). The team at the Royal Marsden are still ironing out the final details and forms but aim to be in a position to start the treatment in the next few weeks. This means that we won’t need to travel abroad for treatment, can (probably) access treatment as an outpatient close to home – meaning that we won’t be split up as a family and ensures that Eloise has continuity of care, entirely within the NHS system. Wow.

Before Eloise starts the maintenance chemotherapy she will need an MRI to assess how she is doing post-proton therapy and as a baseline before the start of more treatment. We know that ETMR tumours are aggressive and that relapses frequently happen. This is a crucial MRI (it’s the longest time so far between MRIs) and we so desperately need it to be clear and to show NO ambiguity, questionable marks, or evidence of new growth. We know that Eloise’s brain will continue to be inflamed/swollen from the radiotherapy for around two months post-treatment and ordinarily MRI’s are only taken after this period. However, given the time-sensitive nature of ETMR’s and the need for further treatment Eloise will have a scan early next week (exact timings TBC). Please, please pray for a clear scan.

Eloise has now been back home for two weeks and, in general, is doing amazingly well. She is walking around, enjoying the garden and all her toys, she is rediscovering her love for music and dancing and is smiling and laughing a lot more. She really is amazing and a true warrior.

However, Eloise is unfortunately struggling with some slight sensory issues (very insightfully identified by an excellent OT) and we also have some concerns over her eyes. Eloise has been through a lot of treatment in a short space of time and we know that her brain is currently swollen from the proton therapy and hope that these are only short-term side effects and not permanent. Eloise continues to have tests and assessments with various specialists to monitor these and other side effects and will do for a very long time.

In summary, Eloise is doing remarkably well and we are exceptionally grateful that she can access ground-breaking new treatment close to home on the NHS, which we hope she can receive as quickly as possible. Before she starts treatment she will have a crucial MRI, that we need to be clear.

For those that pray:

• Gratitude for the approval of the maintenance chemotherapy! Give thanks for all the amazing oncologists, for their support and persistence.  Gratitude that we won’t be split as a family, gratitude that we can access the treatment on the NHS and in the UK.
• Please pray for her MRI to be clear – for there to be no ambiguity, no re-growth, no new tumours.  Please pray for peace as we wait for this MRI as we know it is so crucial.  We continue to feel we are living on a knife-edge and only one day away or one scan away from things being so different.
• Please pray that Eloise can start the maintenance chemotherapy quickly – that there are no unexpected hold ups.
• Please pray any possible sensory side effects of the tumour and treatment are short-term and that we can help and support Eloise through all that’s going on in her very little but attacked brain!

This blog was originally intended as a place for friends and family to be kept updated on Eloise’s progress – particularly as Pete and I have a huge family, circle of friends and church community (we are very lucky!).  Since writing this blog, it has been shared with many, many others – and we know thousands of people have been following our journey and praying for Eloise.  It’s been such a blessing and we genuinely feel that people’s prayers have carried us through the turmoil and challenging times.  When we’ve had little energy, capacity or emotional energy to pray – we know others are praying for us. This has been a tremendous encouragement and comfort.

Alongside this, other families in the UK with children with ETMR’s have found this blog.  Considering the UK hardly has any ETMR cases (we’ve struggled to get data but anecdotally from doctors we talk to, it seems approx. one case a year?), it’s been very unexpected to have two current ETMR families reach out to us via this blog. 

Even more bizarrely is that reading this blog has had an impact on their treatment.  Such little is known about ETMR’s and we have since realised that so much about treatment on the NHS is unfortunately a ‘post-code’ lottery.  Reading this blog has led to one ETMR family reaching out to the same global experts we did and requesting (and eventually accessing) proton therapy, and another family seeking surgery from Conor Mallucci.

The latter family have only recently found out their son, Archie (3.5yrs), has an ETMR.  They too, like us, were told that surgery wouldn’t be possible due to his tumour being on the brainstem.  After finding this blog a couple of weeks ago and reaching out to us, they have since sought a second opinion on surgery from Conor Mallucci (the neurosurgeon who did Eloise’s surgery – after all the other neurosurgeons saying they were unlikely to get it out).  Mr Mallucci is doing the surgery tomorrow (Thurs 15^th) at Alder Hey in Liverpool.  We would be really grateful if people could pray for Archie and his family throughout tomorrow – we’ve been in the same boat as them with so much resting on the most horrendous and challenging surgery tomorrow.

• So please, please pray for Archie’s surgery tomorrow!
• And thank you for following our journey – unexpectedly, you reading our blog, and increasing its google rankings has meant that others have found Eloise’s story – and it’s given them hope and access to treatment they might not have done otherwise.