Chickenpox, MRI, nursery planning…

The last few weeks have been full!

Over the Easter holidays (following Eloise’s intrathecal chemo) we had a lovely few days at Mel’s Mum and Ross’s and then the Easter weekend at a holiday cabin near Lymington, Dorset – thanks to an amazing charity, Momentum.  We had a great few days enjoying the weather and beach hut, but unfortunately on Easter Sunday Anna developed chickenpox.  She had it exceptionally mildly (she’d actually had the chickenpox vaccine!), but it led to Anna being off school and Eloise being put on oral antivirals for two weeks in an attempt to prevent Eloise getting chickenpox/getting it too seriously.  If Eloise gets a spot – it’s straight into hospital for approximately a week of IV antivirals.   What, for most parents is a pain and rite of passage (chickenpox), unfortunately is a serious issue for children with cancer.  So far Eloise appears to have remained clear – she’s not out of the woods quite yet, but so far so good.

We’ve also been exploring options for Eloise to attend nursery in SeptemberEloise will need significant support in order to attend, but this feels like a massive milestone to be even thinking about.  Statistically she wasn’t meant to get to this point – but here we are, exploring options for her to start a nursery.  She really is remarkable!  Thank you God.

That said, we’ve realised selecting a nursery for Eloise is a whole different ball-game to sending a ‘more typical child’ to nursery – it’s a lot more complex.  We (Pete and Mel) have learnt so much this year about things we had very little knowledge of before – brain tumours, paediatric cancer and its treatment and side effects, acquired brain injuries, sensory issues, physio challenges etc. We now have the education system and how it supports children with complex needs to add to the list.  We would be grateful for prayers as we learn and navigate the SEND education system and as more concrete plans are put in place with the local authority, nursery, Eloise’s health professionals and ourselves. 

Thank you to those of you who also prayed for our dog Kobe – he was very poorly (we will save you the details!) but he pulled through and is now back to full health. It still seems odd we asked for prayer for our dog, but he’s been one of the really positive things from the past year and we are really grateful he’s ok.  Kobe continues to bring the girls many smiles and is also an excellent companion in many of Eloise’s home appointments. 

Eloise will finish her 9th round of chemo on Tuesday.  She’s continued to find the second half of the cycle (i.e. now – when she’s on the additional drug) much harder.  Overall she is improving though – albeit very slowly.  She is a little legend for soldiering on.

On Wednesday (4th May) Eloise will have her next MRI.  We probably don’t need to reiterate how important this is – we need it to stay clear, as so little can be done if it shows any sign of relapse.  So please, please pray Eloise’s scan shows that she remains with No Evidence of Disease (NED).  Assuming she remains NED, she will then start round 10 of maintenance chemo on Wednesday 11th May.


How do we feel?

With all the above, a little frazzled.  Eloise has had a lot of appointments, work has been full for Pete and our head has been in lots of different places.  Anxiety before her scan continues.

For those that pray

  • Pray Eloise’s MRI scan shows No Evidence of Disease!
  • Give thanks that Eloise continues to slowly get stronger.  Give thanks for her resilience and for God’s work in her life.
  • Pray for the logistics as she goes for the MRI scan – being nil by mouth, having the GA, getting Covid swabs on Sunday etc.
  • Pray as she finishes this round of chemo – most importantly that she avoids chickenpox and doesn’t pick up any other infection that sets her back.
  • Give thanks that Anna continues to enjoy life and has recently learned to swim and that Kobe has returned to full health.
  • Give thanks for the generous and continued support of many, with special thanks to Momentum for a nice Easter weekend away
  • Pray for wisdom and favour as plans are made for Eloise to attend nursery with the right support and environment.

8 down and 4 to go – plus a hospital admission (but not for Eloise)..

Eloise begins round 9 of her maintenance chemo on Wednesday. Unfortunately, Eloise picked up a cold quite early into round 8 and has been battling with a runny nose and lots of dribble but thankfully it never resulted in a temperature or hospital admission. Earlier rounds of intrathecal chemo have been postponed (on the day) due to previous colds so naturally we are keen for it to improve further before Wednesday.

Eloise will be due her next MRI at the end of round 9.

During this round Eloise has:

  • Been given a swank new orthopaedic buggy from Wheel Chair Services – big thanks to the NHS. Eloise loves the new buggy which has enabled us to extend our range of activities and will be better for her from a physio perspective.
  • Had another ophthalmology review at Moorfields Eye Hospital – which although initially was very positive, resulted in a referral for further scans due to retinal pigmentation.  
  • Had a range of assessments including from an Educational Psychologist, for an application for funding for extra support to help Eloise attend nursery in the autumn.
  • Continued to get regular visits from her BFFs – the community nurses.  She genuinely asks ‘Nurses coming?’ most mornings – and is even disappointed when they aren’t!
  • Continued to struggle with side effects of treatment – such as fatigue, short-term memory, appetite and sore skin.

In other (but related) news – unfortunately our much-loved dog Kobe is seriously unwell and has been in animal hospital since the weekend. After a lot of treatment he is also having an ultrasound tonight and in the vet’s words “having a tube fitted for feeding – like your daughter has!”. The girls seem fairly relaxed with the idea of Kobe being an in-patient (they perhaps have a distorted view of how often people go to hospital?!). Juggling chemo, appointments and dog medicine, and trips to the vet/animal hospital probably wasn’t our top option for Anna’s Easter school holidays. We are hoping that next week will be calmer.  

On Saturday, I (Pete) attended a cancer-Dad’s golf morning, organised by a brilliant local charity, Momentum. It was a privilege to spend some time with a small group of extraordinary Dads, a few of whom we became friends with in ICU and with others through sharing a room in the Royal Marsden. Thank you Momentum.

For those that pray:

  • Please pray that Eloise’s chemo goes ahead on Wednesday (free from any cold and covid!) and with no complications. Pray the chemo does its job.
  • Thank God for the new buggy and the added options for going out (mainly to walk Kobe)
  • Please pray that the side effects Eloise is experiencing are short-term and lessen later this year when she stops her current chemo regime – In particular her tremor, fatigue and short-term memory (as previous treatment could have also caused this).
  • Please pray that the increased pigmentation noted in her eye test is also a short-term side effect and isn’t anything long-term.
  • Please pray that Kobe makes a full recovery – he might be just ‘a dog’ but for Eloise (and us all) he has been the biggest source of joy and therapy this past year.
Anna & Eloise enjoying themselves
All the girls enjoying themselves – with Kobe never far from the action

This time last year… the story of prayer, brain surgery, a miracle and a determined girl

A year ago today Eloise had her life-changing surgery to remove a cancerous tumour – right in the middle of her brain (in the tectal plate, pineal region, brain stem area of the brain).

Prior to this, neurosurgeons from all across London and the SE had told us it was in a very, very risky location for surgery and that they were VERY unlikely to get it out (hence they hadn’t done surgery up until this point). But after seeking out a second opinion – a neurosurgeon in Liverpool, Conor Mallucci, said he would give it a go, using an intraoperative MRI. And amazingly he got it out and Eloise had a ‘Gross Total Resection (GTR).

If you look back at the blog from those days last year you will see Conor actually initially said he’d left some ‘straggly bits’ around the instantly-deadly Vein of Gallen. But the next morning, whilst Eloise was in intensive care, Conor came down to tell us that the scans ‘looked really good’ and the radiologists had said it was a Gross Total Resection. With those words we knew that Eloise still had a chance (no matter how small).

We still don’t know what happened (the neurosurgeons don’t really have an explanation either) but those ‘straggly bits’ aren’t there any more! With those words ‘Gross Total Resection’ we felt God had done a miracle, and she still had a chance. We also knew Eloise would need countless more miracles to defy the odds (even with a GTR, the vast majority of children with ETMRs don’t survive many months).

And here she is today – having had miracles to access literally pioneering treatment here in the UK (she’s the first UK person to receive some elements of it!) and with her last scan showing No Evidence of Cancer.

To be honest we could say so many things about this, but for now we just want to say;

Thank you Jesus for doing a miracle in Eloise’s life!

Thank you to the thousands of people who prayed. We are humbled, grateful and felt (and feel) surrounded by an army of people interceding for our little girl.

And we pray that the miracle that He started, that He will bring to completion. Defying the odds, cancer-free, full health restored and life in abundance for our darling girl….a story of prayer changing things!

Eloise earlier today

Chemo Round 8 starting tomorrow…

So Eloise has done 7 rounds of her maintenance chemotherapy! 5 months to go….

Tomorrow, Eloise is due to have her 8th intrathecal chemotherapy at the Royal Marsden. We’d be grateful if you could pray this goes smoothly, there are no unexpected hiccups and that Eloise tolerates the general anaesthetic and chemotherapy well.

Eloise generally seems to have a couple of weaker days after intrathecal chemo, followed by 10 ‘better days’ when she only takes one chemo drug orally. The second half of the cycle (when she takes a second chemo drug orally) Eloise seems to be less energetic, get sore skin and lose her appetite.

For those that pray:

  • Give thanks that Eloise was with No Evidence of Disease at the last scan. Pray this continues and that the chemotherapy kills any remaining cells and inhibits any cancer cells ever growing!
  • Pray that the intrathecal chemo goes well tomorrow – that Eloise tolerates being nil-by-mouth, the GA and the chemo.
  • Pray that Eloise tolerates this round ok – without too many side effects (sore skin, loss of appetite etc).
  • Pray for protection against infection which continues to be such a risk for Eloise.

Praising and lamenting

Overall, the last few weeks have been good.  Eloise has stayed out of hospital (apart from for pre-organised appointments) and she’s been enjoying the resemblance, at times, of a more ‘normal’ life  (excluding community nurse visits, chemo being given, having an NG feeding tube, feeling poorly/not eating much, being unsteady/struggling to walk etc.)

We’ve not written a blog for a while, so this is a longer post about how we are feeling at the moment. 

Praising

We can’t overstate the miracle it is that our girl is here with us today and at the last scan she was NED (with No Evidence of Disease).  We will never take our days with her for granted.  Last year we were given 10% (at the very max) 20% chance of survival.  I (Mel) remember very vividly, before walking out of the meeting with the oncologist asking her ‘Please, just tell me you know of one survivor?’, but the oncologist was deafly silent….And in addition to ETMRs having a dire prognosis, Eloise’s tumour was in an inoperable location.  We knew we were in the space of needing a miracle. And over this past year we’ve been witnessing that miracle!  For a reminder of the story so far see here

So we praise God for his goodness, for getting Eloise to be NED at her last scan – and for the countless miracles and breakthroughs that have led to Eloise having pioneering treatment and being where she is today.  We continue to hold onto what we wrote in our ‘Ebenezer blog’ – God has brought us this far and we put our trust in Him that He will continue to be with Eloise and us all.  The song ‘Way-Maker’ has felt particularly pertinent.

And we also praise God for some small breakthroughs in recent weeks (which to many others won’t appear like they are):

  • Eloise has started getting strong enough to walk in the garden again.  She was so weak and unsteady that for the last few months she wouldn’t stand on her feet outside (plus it was cold, which she disliked – possibly because it caused neuropathy).  This has not been great for Pete/my backs, especially as Eloise generally hates the movement in the buggy.  A few steps outside has been really encouraging to see and we look forward to warmer months and more of this!
  • Eloise has sat in – and enjoyed – the garden swing!  She hasn’t wanted to go in a swing since surgery last March.  Small things that ‘normal kids’ do, but have been impossible for her.
  • Eloise has really enjoyed a new experience – Soft Plays!  A wonderful company in Guildford, Gym Jams, has been exceptionally kind and let Eloise use their soft play for half an hour (all Eloise can manage) before they open for other children, and for free.  This has been utterly fantastic – it’s great from a physio and general play perspective (and infection-safe) and Eloise now regularly asks for ‘soft play!’.  We are so grateful.
  • Eloise is starting to enjoy some books again (short, low-sensory ones).  For the last 6 months since proton, she has generally refused to read stories as ‘its all too much/too much visual sensory overload’.

Lamenting

Unfortunately, the dire stats for ETMR patients appears to be holding true amongst children we know of fighting this deadly, terrible disease.  As we have commented on previously, this comes with a whole host of emotions.  Our hearts breaks for them – knowing all too well, that Eloise too, statistically should not be with us.  For those that pray, please pray for these children and families.  It’s just so unfair.

We also lament over what ‘we have lost’.  Google photo unhelpfully pops up on our phones and shows you ‘1 year ago today’.  This time last year, Eloise was just starting her first induction chemo round, and was jumping and bouncing around in her cot, with her bright-blonde hair.  She was energetic, chatty, physically strong , smart , sassy and advanced beyond her age. She was at this point ‘chemo-naïve’ as our oncologist describes it. Our lament is that so much has been stolen this past year.  Eloise’s language and development have basically stalled at this age (with just some small, slow progress), she’s physically significantly weaker, and her zest for life has largely been zapped.  And her hair, whilst it has returned, is still very different to her beautiful bleached blonde locks.

But then we remember what her body has taken this year – to ‘save her life’, the brain surgeries and treatment has had to be so aggressive.  Chemotherapy and radiotherapy (proton) kill cells – and unfortunately not just cancer ones. She, and all other children that go through any-type of similar treatment are absolute heroes. 

Please will you join with us in praying that the things we saw in Eloise bouncing around in her cot a year ago, will be drawn out of her again? We know this is likely to take many, many years post-treatment (and in theory, many side effects could be permanent), but we’d be grateful if you could pray for some specific things:

  • Pray for her eyes that have an upward gaze (and head titled down).  Pray she doesn’t have double-vision (she’s too young to say, but apparently this could be happening).  Pray for her eyes to be aligned.
  • Pray for her physical strength.  Pray she can re-learn, and have the strength to, jump and bounce again.
  • Pray against tremors, unsteadiness and any absence moments.
  • Pray for her smart intelligence to once again shine.  Pray against any slow processing speed as a result of the proton therapy. 
  • But more than anything, pray she smiles, laughs and loves life!

We have days when we see glimmers of hope in all of these areas.  But we’d be really grateful if you could pray for sustained breakthrough in these areas – even whilst she’s still on treatment, suffering the side effects of her current drugs and progress feels stalled. And please, of course also continue to pray that she forever remains NED!

We are utterly proud of our darling girl.  Eloise is inspirational, a fighter, has the kindest nature and we are so privileged to be entrusted as her parents.  Keep going Eloise!

No Evidence of Disease!

We just wanted to update you all to say Eloise’s MRI report shows No Evidence of Disease (NED)!  The report states there is ‘No evidence of disease recurrence or disease dissemination’.  Praise God!!!

Eloise ended up having her 7th intrathecal chemotherapy yesterday, so we are now over half way through the year of maintenance chemotherapy.  She tolerated it well and we are very grateful to the staff at the Royal Marsden for pulling out all the stops so Eloise could have the treatment yesterday.

Today we met with Eloise’s neurosurgeon at St George’s.  Whilst the scans continue to show low pressure and some microhaemorrhages (most likely from proton), we are going to leave the shunt setting for now and see how things develop – because Eloise is clinically doing much better.

How do we feel?

  • Ecstatic, elated and relieved to be honest.  All those involved in her care are also really chuffed with the scan too!  She’s so far defying the awful odds.  We heard that there was even a cheer at a meeting when her results were read out 😊 We are so grateful and at times still can’t believe she is in this position.  It’s still a long way to go, but with each scan where she is NED Eloise’s odds slightly improve.  Eloise is so far managing to walk a very narrow tightrope.
  • Honestly, we also have times where we have ‘survivor’s guilt’.  This is hard to articulate, but it’s very real.  For ETMR patients, Eloise is doing unusually/remarkably well to be NED at this point.  But that does also lead to lots of questions and emotions.
  • Optimistic about the next few weeks.  Eloise appears to be getting stronger and most importantly enjoying life more and more! 

For those that pray:

  • Give (massive!) thanks that Eloise’s scan showed that she is NED!
  • Pray that Eloise continues to get stronger, be less tired and enjoys life.  Pray that she develops both physically and mentally over the coming weeks.
  • Pray against absence seizures, tremors and unsteadiness.  Pray for protection from infection and anything else that could hold her back. 

Encouraging early news!

We have been informed that the Oncologists at the Royal Marsden have been forwarded the scans from Friday and from their review “the scans appear stable and look fine”. We still need to wait for the full radiologists report to get the final findings but indicatively – it looks like it is really good news!

We are absolutely thrilled (and a little shattered emotionally) – this is simply amazing news! This is another significant milestone along the long road to survival and we don’t take it lightly, we are truly grateful. Thank you for all the messages and prayers of support, encouragement and love.

Eloise also completed another milestone this week – having her first, ever haircut. We vividly remember the morning that Eloise lost her hair in the Royal Marsden (only 19 months old) and then walked into the playroom – saw herself in the mirror and then fell on the floor and burst into tears saying ‘hair gone, hair gone!’. Tonight was a special night we thought we might not experience. One nice milestone to celebrate the other.   

Eloise thoroughly enjoying her first, ever haircut

Given the positive scan indications, Eloise had more blood tests today in preparation to start her 7th round of maintenance chemo tomorrow. Unfortunately it now looks like this won’t happen due to admin reasons, which isn’t ideal.

We have meetings booked with Eloise’s Oncologist and Neurosurgeon later this week which may make finding a new chemo slot logistically challenging – prayers for this would be much appreciated.

How do we feel?

  • Grateful, utterly grateful
  • … and tired, but mostly grateful
  • Also really chuffed to see Eloise enjoying life a bit more.  Her zest for life seems to be slowly returning. Instead of saying ‘go home’ she’s frequently said ‘No, stay!’ ‘More’ ‘Again’ to activities, playdates with her cousins and little trips out this past week. We know things are up and down and this might not be sustained, but it’s so wonderful to see her happier.

For those that pray:

  • Thank God for His wonderful protection and healing
  • Please pray that the full radiology results confirm the early positive review and that there is no sign of cancer!
  • Please pray for wisdom and discernment as we meet with the neurosurgeon to discuss potentially resetting Eloise’s shunt
  • Please pray that we can fit in Eloise’s chemo this week – without too much delay and too many complications

Eloise has MRI

Just a short update. Eloise had her MRI today at St Georges. Thank you for those that prayed – her cold improved and came off her chest, and she was well enough for the General Anaesthetic. So grateful!!!

We now await the results…

The current plan is for Eloise to have intrathecal chemotherapy Round 7 on Wednesday and then an appointment with Eloise’s neurosurgeon on Thursday. We hope to get the MRI results ahead of the chemo…

How do we feel?

To be honest just quite whacked! It’s weird how after these ‘key moments’ your body catches up on you.
And for now, we just wait – and try to distract ourselves whilst we do.
And we continue to be incredibly proud of our lovely girl who goes through so much, but shows incredible resilience and strength of character.

For those that pray:

  • Give thanks that Eloise had the MRI today with no big hiccups.
  • Pray the scan shows Eloise remains NED (with No Evidence of Disease)!
  • Pray for any other aspects that the scan might show – the last scan showed low pressure and micro-haemorrhages.  Pray that the scan shows nothing alarming or concerning.  Pray the scan is helpful in adjusting Eloise’s shunt (if that’s what’s needed) and for wisdom for the neurosurgeons and team as they look at the scans and decide if anything needs doing/adjusting.
  • Pray for us and our wider family, as we wait for the results…

It’s here – MRI week

Eloise enjoying dressing up with Anna

Overall, Eloise has had a relatively good couple of weeks.  We’ve had some really helpful and encouraging meetings with professionals (epilepsy consultants, physios, speech and language therapists etc).  Eloise still has a very long way to go and has many complex challenges, but we’ve felt encouraged and hope that some (not necessarily all) of these will improve in time – not necessarily in weeks or months, but over years once she finishes treatment.  Fighting brain cancer is a relentlessly long game.

Eloise has been laughing a bit more, has had more energy and strength and her appetite has generally improved.  We are thinking that some of her proton ‘somnolence’ is finally starting to wear off – but it’s very slow! Her tremors have reduced since reducing one of the chemo drugs which is really reassuring, and she’s become a little more steady on her feet.  Eloise still struggles with car rides, light sensitivity, the cold weather (so she doesn’t enjoy the park at the moment!), bumpy buggy rides etc. As a result our activities are limited, particularly as we can’t do much due to her infection risk – but she is very slowly making progress.  Eloise most of all enjoys playing with Anna, Kobe and other family members.   Her progress can feel disappointingly slow at times, but when we think and look back, she is making small improvements. She’s an absolute hero to just get through each day.

Eloise’s MRI is due this Friday (4th February), first thing in the morning at St George’s Hospital.  As many of you know, these scans are absolutely key.  Eloise must remain NED (as our options, if she relapses, are very, very limited).  With ETMR’s it feels incredibly binary.  Eloise is then due to have her 7th round of maintenance chemo starting the week after (9th February).

Unfortunately Eloise has picked up another cold over the past few days (not Covid).  We were quite concerned about this a few days ago and were worried it might delay things, but Eloise has been slightly better this weekend.  Please pray this cold doesn’t prevent her MRI via general anaesthetic going ahead (the last chemo round was delayed because she had a cold, so they couldn’t give her the GA).  Please pray the cold stays off her chest and clears up, that we continue to avoid Covid, and that Eloise is well enough to have the scan.

How do we feel?

We continue to feel a complete mixture of emotions – many are so hard to articulate. We recently came across the untranslatable Greek word, χαρμολύπη, which expresses the concept of joy intermingled with sorrow – which perhaps best sums up how we feel some of the time. We are unbelievably grateful for where Eloise has got to and the miracles that have been done (Joy), but also have a massive sense of ‘loss’ over what has been stolen from Eloise and the challenges she has to face each day and is likely to face in the future (Sorrow). We are naturally having a whole host of underlying emotions ahead of her scan, but at the moment are trying to stay positive and focus on what lies ahead each day.

For those that pray:

  • Pray that Eloise’s cold rapidly improves so that her MRI can go ahead.
  • Pray for all the practicalities related to the MRI – Covid swabs, being nil by mouth, having the GA, having the shunt re-set after the scan etc.
  • Pray for us as a family as we await the scan and the results (we are likely to get them a few days later).  Pray against tension and for us to be peaceful.
  • Pray that her MRI shows she is that there is NO EVIDENCE OF DISEASE. 
  • Pray for any other aspects that the scan might show – the last scan showed low pressure and micro-haemorrhages.  Pray that the scan shows nothing alarming or concerning.  Pray the scan is helpful in adjusting Eloise’s shunt (if that’s what’s needed) and for wisdom for the neurosurgeons and team as they look at the scans and decide if anything needs doing/adjusting.
  • Pray that Eloise continues to improve (and perhaps a little quicker than has happened over the past few months) and goes from strength to strength.  Pray her tremors continue to improve and her overall development keeps moving forward. 

Not staying in hospital endorphins

So Eloise had her intrathecal chemotherapy yesterday!  It was a long day for us both (Mel and Eloise) and she didn’t enjoy being nil by mouth until 11.45am, but we got through the day.  Eloise seems to have tolerated the chemo very well with no fever and even came home last night very excited (we call it the ‘I’m not staying in hospital endorphins’)!

In the afternoon we had a useful meeting with Eloise’s oncologist and we’ve decided to slightly reduce one of her chemo drugs to see if it helps with her tremors (up until now, this drug has been increased week-on-week).  We are hoping it helps.  It was also good to discuss Eloise’s overall health and be reassured that much of her tiredness is to be expected so soon after high dose chemo and stem cell transplant, proton and now her continued active chemotherapy treatment.  It was helpful to be reminded that this is a very, very long game and to have realistic expectations.

The next couple of weeks we have various appointments – community nurse visits, meeting with Eloise’s Proton oncologist, speech and language therapist appointments, physio appointments.  We are glad Eloise is starting to now receive some of this support ‘in the community’ and not just in hospital, as she is likely to need some of this for the foreseeable future and beyond chemotherapy treatment.  We are beyond grateful to the marvellous NHS!

For those that pray:

  • Give thanks that Eloise has recovered from her cold and was able to have her intrathecal chemotherapy yesterday.  Give thanks for the wonderful Drs, nurses and staff.
  • Give thanks that she tolerated the intrathecal chemotherapy well with very few side effects.
  • Pray that Eloise gets stronger and that the various appointments are helpful.  Pray Eloise’s tremors and unsteadiness improve.
  • Pray Eloise continues to be NED!

Please also pray for other families affected by ETMRs.  In particular please pray for Savannah (who we mentioned earlier last year as she is 1 month younger than Eloise), who’s cancer has unfortunately spread despite intense chemo and protons.  She is enrolling on a CAR-T clinical trial which aims to galvanise the immune system to fight this dreadful disease.  Pray for strength as her family are separated and for this treatment to work for Savannah (and for ETMR’s in general, as it would be a game-changer).