Eloise going for surgery

Eloise went in to St George’s Hospital to have her second MRI this morning.

As a result of the MRI Eloise has been immediately admitted and will undergo surgery to have an ETV tomorrow morning.

The Neurosurgeons and Radiologists are also going to meet to discuss potential surgery on the tumour.

Please pray for:

  • Successful ETV surgery (including no complications)
  • That the tumour has not grown
  • Logistics (only one parent is allowed on the ward and telling/supporting Anna)

Further updates will follow in due course.

Hope and prayers this week needed

So the last week has been quite challenging and upsetting.  Unfortunately Eloise’s trembling has worsened so much so that at times she is often struggling to walk and keeps tripping/stumbling or just falling straight on her knees. She has sometimes started scooting around furniture again. 

After sending a video of Eloise trembling to the Epilepsy consultant and neurosurgeon, Eloise was immediately admitted to the paediatric ward at the Royal Surrey.  Unfortunately only one parent was allowed on the ward due to Covid, so Pete waited downstairs. Lots of lovely Dr’s and nurses checked Eloise out but Eloise got so upset every time anyone got near her.  They did checks to ensure she wasn’t in ‘urgent danger’ and also took some more blood tests etc.  In the end they concluded that Eloise now has a ‘tremor’ – but as of yet don’t know the cause, and there are so many factors it could be.  We returned home, rather exhausted after another very unhappy visit – Eloise is literally just at the worst age for all of this, as she just gets so distressed no matter what Dr’s and nurses do.  We couldn’t fault their care on the ward and are very grateful for their support and help.

Unfortunately Eloise’s seizures remain similar (slightly less today – approx. 9 but typical ~12+). 

Following the hospital visit, the neurosurgeon has decided to bring forward Eloise’s  brain and spine MRI to this Wednesday 27th at St Georges.

This Monday (25th)/tomorrow we will also be at St Georges as we have an appointment with the Endocrine (hormone) specialist, followed by an appointment with Eloise’s Neurosurgeon.  We then need to get our Covid swab tests done, so Eloise can have her MRI under general anaesthetic on Wednesday.

How do we feel?

  • This last week has been incredibly upsetting – it is awful to see our daughter who walked at 10 months, be so unsteady on her feet.  You don’t really expect to see your child ‘regress’, especially so quickly.  She has points in the day where she is ‘better’ (but not ‘normal’) and other points where it is particularly difficult (e.g. for 1 or 2 hours after waking in the morning/from her nap).
  • We feel really, really grateful that Eloise will have an MRI on Wednesday, especially when we know so many people are having theirs cancelled.  It breaks our hearts to hear of others having theirs cancelled.  But we equally have anxiety around this MRI and the need for it…  We are really hoping it will bring clarity to the situation, because at the moment the many unknowns make this particularly hard.
  • Unsurprisingly, Covid is making the situation harder – it really is an odd time for everyone.  It is hard not being able to do things to cheer ourselves up and get out of the house, or to do something to mentally escape the situation.  It really does feel like there is little reprieve (especially, at times, for Anna too).  But we all feel like this in many ways!  We are making sure we take the girls out each day for a walk no matter what the weather and are spending quite a bit of time in the garden, even if it is raining 😊.  But we look forward to the warmer Summer months!
  • The situation is not without hope but at the moment it is without encouragement.

For those that pray:

  • Pray that the appointments with the Endocrinologist, Neurosurgeon and MRI go well – both logistically and that the various consultants are able put more of “the jigsaw” together.
  • Pray that Eloise’s seizures and tremor reduce and ultimately stop. (Since we drafted this blog on Friday eve, Eloise has actually had a couple of better days but it is all very inconsistent).
  • Pray that Eloise’s MRI results show that the tumour has not grown and ideally, reduced in size.
  • Pray for protection and peace on Anna, as Pete, Mel and Eloise will be out of the house a lot this week and she will be eager to know we are all ok.  

Update 16th Jan 2021

This week we’ve been home-schooling Anna and trying to make a bit of progress on various appointments etc for Eloise.

We had an appointment with the Epilepsy Consultant who has upped her current medication again to the max.  The Consultant was really understanding and does seem to be on our case in pushing for appointments and tests to be progressed.  Despite neurosurgeons thinking the seizures not being linked to the tumour, she continues to think they are – noting that Eloise isn’t a classic case (but Eloise hasn’t been throughout this whole situation). 

Unfortunately Eloise’s seizures don’t seem to be improving much.  She is also now going to be referred to a neurologist to look at this (alongside her broader situation) and she is likely going to need to try an alternative medication.  Her shaking/ trembling/unsteady on her feet seems to be worsening and particularly bad after waking in the morning or after a nap – and interfering with her playing etc quite a bit.

We have another appointment booked with the neurosurgeon on Monday the 25th January.  We also now have an endocrine specialist appointment on the same day (at St George’s).  We are still waiting to hear when the ophthalmologist appointment will be.

We also have her Brain and Spine MRI (by general anaesthetic) booked for Wednesday 17th February.  We are really pleased this has been booked in, as this scan is crucial in determining the current growth of the tumour and to see if there are any changes.

How do we feel?

  • Gutted that Eloise’s seizure medication hasn’t helped.  We really need it to start working and/or the alternative medication to work.…
  • Relieved that the MRI has been booked and other appointments have been made.
  • Anxious as we still don’t have a ‘prognosis’ as there are still so many unknown parts of the jigsaw.

For those that pray

  • Prayers that Eloise’s seizures will stop/ the medication will work – and that the shaking/trembling will improve soon
  • That the appointments will all go ahead and not be delayed due to Covid

A quick little update

A quick little update

We’ve received the second opinion from Great Ormond Street Hospital (GOSH).  In general their recommendation supports the overall approach taken by St George’s Hospital, but adds a few things to note:

  • It is more cautious and recommends an earlier MRI scan (2-3 months i.e. end Jan to Feb) to monitor the tumours size to ascertain the growth potential.  There are some concerns that it appears ‘cellular’ from her first scan – we are trying not to worry about this, and hold onto it still ‘most likely being low-grade’.  They recommend discussing the risks of doing a biopsy once we have the information from the next MRI scan.
  • They agree and think the seizures aren’t currently being caused by the tumour.

Eloise’s seizure medication by the Epilepsy Consultant has been increased but unfortunately doesn’t seem to be having much affect.  She is still having 10+ seizures a day and is sometimes trembling and unsteady on her feet for parts of the day.

How do we feel?

  • We are trying to just keep going through ‘the process’ and actually not think too much! We still have to see the endocrine specialist and ophthalmologist and some other tests might shed some further light on the situation.  Someone advised us not to try and work it all out from the first scan – as things are so complicated, and we still have lots of pieces of the jigsaw to put together.  We are still just at the start…
  • We are trying not to worry and hold onto the tumour being ‘most likely’ low-grade.
  • Disappointed that Eloise’s seizures aren’t improving yet, but hoping that at some point they will…
  • Not sure how the new lockdown will work – a school closure for Anna, further pressure on the NHS/hospitals (A video of St George’s Hospital was on the BBC today – saying that some cancer treatments were being stopped due to Covid) , and Eloise unable to join her new childminder as we don’t think we can leave her with a new childminder when her seizures are so frequent and according to her care plan we are meant to call 999 if she has a cluster of seizures (which the day before yesterday we were close to doing again…).

As I’m sure most of us still do – I keep thinking if you had told me in January 2020, our current situation (in its entirety), I could not have even imagined where we are now in my wildest imagination…

For those that pray

  • For Eloise’s seizures and trembling to improve
  • For strength to homeschool and survive lockdown, whilst looking after and caring for Eloise and juggle all the appointments etc.
  • For wisdom to know to manage work/working in this situation.
  • For us to stay positive, provide a calm and fun home environment and manage to keep smiling

Also a massive thank you for kind messages etc – sorry if we haven’t responded. But please know we really, really appreciate receiving them even if we don’t manage to reply.

If helpful, you can ‘subscribe’ to blog updates (and get them sent straight to your inbox) by signing up in the box at the bottom of the home page.

No news

Quick update for people who have kindly asked how Eloise is doing and if we have heard back from Great Ormond Street.

Eloise continues to do amazingly well developmentally (her language is exceptional) but is unfortunately still having a high (10+) and increasing number of seizures a day – which is disappointing as we were hoping the medication would have helped and started to work by now. We are hoping to speak with the Epilepsy Consultant on Wednesday this week.

We have unfortunately also not heard from Great Ormond Street yet – which is also disappointing but perhaps not that surprising given the time of year. We hope to hear more this week.

Thanks for all your love and prayers this Christmas time.  Its been a hard Christmas for everyone with restrictions etc, so we are very grateful that people are still thinking and praying for us. 

We would be grateful for prayers for:

– Positivity – at the moment it feels like each piece of information is not necessarily better news (the main piece of good news being how smart Eloise is and how she is developing)
– Eloise’s seizures to stop
– Anna to enjoy her school holidays despite the circumstances around her
– Energy to care for the girls well, whilst trying to deal with our own emotions regarding the whole situation.

And to bring you a little smile: Eloise LOVES music and dancing, so for Christmas we bought her a little music player, so she can play her own music (rather than want to use our phones ‘Mumma, Phone Song, Fun’ is what she says to us…).  Her favourite song at the moment is ‘FUN’ by Rend Collective.  Do take a listen (and even dance) – it lightens our mood!

Another day, another prayer request: Prayer request for Great Ormond Street’s opinion

For those that pray we would appreciate prayers for Eloise and for the team at Great Ormond Street Hospital who are meeting tomorrow to discuss Eloise’s case and provide a second opinion on their diagnosis and treatment options.

  • Eloise has unfortunately been continuing to have seizures and in the last few days has also been trembling and has been slightly unsteady on her feet, even when she is not having a seizure.
  • Eloise started taking anti-epileptic drugs (AEDs) a few weeks ago (it has taken 3 weeks to bring the dose up, in steps, to the recommended dose).
  • Eloise’s seizures have levelled off but are now plateauing around ~10 a day
  • That said, today Eloise (& Mel) ended up being admitted into hospital following a ‘cluster of seizures’ and additional trembling (she had 4 in half an hour, with persistent trembling/shaking between) – she totalled 16 seizures today.  A long story short, Eloise was sent home as she needs to wait to see a consultant – who wasn’t available – only after some lovely Drs and Nurses were very helpful and supportive.
  • We had another appointment today with the Neurosurgeon from St George’s who reiterated that surgery is fraught with risk and doesn’t think we should to a biopsy/surgery at this stage and that ‘watching and waiting’ was the recommended approach until the next MRI in Feb.

Second opinion from GOSH:

  • We have asked for a second opinion from Great Ormond Street Hospital (GOSH) both for prudence and to get their thoughts on whether there is a link between the seizures and the brain tumour – as we have been presented with two different schools of thoughts on this so far.
  • GOSH’s Neurology Team are meeting tomorrow (22nd) morning to discuss Eloise’s case.
  • We were due to meet with a Neuro-Oncologist from GOSH on the 4th Jan to discuss the outcome of their meeting but the meeting has now unfortunately been cancelled due to Tier 4 restrictions. (GOSH will now send a written report to the Neurosurgeon at St George’s – our main hospital).

Please pray for:

  • GOSH’s MDT to come back with a clear recommended plan and a clear opinion on whether there is link between Eloise’s seizures and the brain tumour
  • That we would feel peaceful with the agreed (St George’s and GOSH) treatment plan
  • For the reduction and complete stopping of all seizures and trembling
  • For continued resilience as us as a family – with Tier 4 restrictions and other family challenges it’s feeling pretty exhausting (e.g. Mel’s Grandpa has been in hospital and her Step-Grandmother passed away 2 weeks ago, it feels quite rough going)

How do we feel:

  • Grateful – that we have access to amazing world-class medical care at St George’s and GOSH (Eloise also has referrals on to very specialised Neuro-Paediatric Eye and Endocrine specialists)
  • Exhausted – watching Eloise continuing to have seizures (and seeing little improvement), trying to navigate a new medical world, being continuously told that this ‘will be a long road’ (e.g. 10 years) and having to emotionally come terms with not only having a daughter with a brain tumour but, in essence, a long-term “illness” is pretty waring (and that’s before Covid/Restriction changes..!)
  • Frustrated – That Eloise’s seizures are not decreasing/getting under control and that (at times) some of the admin systems/processes in the NHS have been less than ideal. Frustrated that Eloise’s tumour is in such an unusual place for a brain tumour – making surgery even more complicated and fraught with risk, making decisions about treatment/next steps even more challenging.

A long – very long road ahead

A long – a very long, road ahead.

Its taken us a while to know how to write this blog…

Yesterday Eloise had blood tests (for biomarkers) and we met with a Neurosurgeon at St George’s in Tooting.  We previously understood that either a biopsy or surgery were going to be discussed.

To be honest, we weren’t expecting what we were told.  As we said before it’s all very complex.  And apologies for any mistakes with the below – we aren’t medical, but are doing our best to follow the detail and to simplify it for other people too!

The good news is that the tumour appears to be a low grade (but we haven’t got a biopsy) and the Neurosurgeons think the scan indicates this.  The challenge is that it is in a very awkward place to treat.

In short, there are 3 challenges:

  1. Seizures/Epilepsy – Eloise has focal seizures.  The medication looks like it might be making a difference (over the last couple of days the number and severity has slightly improved).
  2. Cerebral Spinal Fluid on brain (due to tumour) has built up.
  3. Tumour is on the tectal plate – the Neurosurgeons think its low grade (but don’t know) but the tectal plate is the area right in middle of brain at the top of the brain stem.  This is a very tricky part to get to – for surgery or possibly even difficult to do a biopsy.  The tumour is 2cm by 2cm.

The neurosurgeon went through various options with us

Firstly, the Neurosurgeon thinks Epilepsy is separate to the brain tumour and not related – this is contradictory to what we’ve been told before (in writing) and actually doesn’t sit well with us – but we aren’t medical professionals.  We will apparently need to deal with the epilepsy separately via medication etc.

Options:

  1. To deal with CSF (fluid) they can do either a shunt or ETV
  2. To deal with the tumour they can do surgery – but they won’t be able to remove it all via surgery.  Chemo/radio would therefore also be needed after if it was needed to remove it all.

At the moment the risks of these surgical options is too high. The Neurosurgeon went through the risks/likely outcomes of some of the surgery and these are high risks – mainly due to the location of the tumour etc.  

So the recommendation is to ‘watch and wait’ and do a brain and spine MRI in Feb to see if the tumour has grown (which will tell us how aggressive it is i.e. which grade).  Understandably, they only want to operate once Eloise’s symptoms justify the risk of the procedure – there is the ‘Do No Harm Principle’.

In the meantime we also need to see an Eye/sight specialist with a specialism in neurology, and an endocrine specialist and also wait for the Biomarker results from bloods she had done today. Any of these results could trigger some different recommended action and for Eloise to have surgery, but for now we are likely to just wait until the next scan in Feb.  Depending on the results of this scan we might then have further active monitoring/watch and wait for many years. To use our own analogy, we will be waiting until one of the lights (tests with a specialist) goes off on Eloise’s dashboard until we take action.

How do we feel?

  • To be honest – very confused.  It’s a lot of information to take on board (the above is an attempt at a summary) and the path ahead is not clear.  We aren’t sure how to view the situation – all the options are still very much on the cards, with none being ‘simple’ or ‘solving the problem’ but also all involving significant risks – and we just don’t know when we will need to take these routes.
  • We also feel surprised that there is the suggestion that Eloise has epilepsy despite the tumour.  This feels odd to us and we are going to request a second opinion.
  • Feeling like this is a LONG journey.  Our best case (as we confirmed with the Neurosurgeon) is that she has all these tests for 10 years, nothing grows, the fluid doesn’t worsen, and Eloise’s seizures ‘magically disappear’ or get better with medication.
  • A little lost and not knowing how to view the next few months or years, and just deeply sad that our darling girl is going to have to face so many ongoing tests and challenges.

I’m sure you, like us, will have questions too.  We have sent some further questions to the Neurosurgeon and hope some of these can be answered (at the moment it feels like a lot of responses are ‘we don’t know’)…

For those that pray…

  • That Eloise thrives and continues to love life – and that her seizures continue to improve and stop soon!
  • That we can get a second opinion from Great Ormond Street Hospital and that this helps us feel peaceful and that we can get some clarity on our further questions
  • That if a different course of action (rather than doing tests and waiting until February) is needed, that something eg a test result, will prompt this
  • That we can enjoy Christmas despite the challenges – and the girls can have huge amounts of FUN after a hard few weeks
  • That we can quickly adapt to a ‘new normal’ of appointments/scans, waiting for results, further discussion over next steps and not knowing what’s around the corner.  All of us have had to ‘get better’ at living with uncertainty in 2020…we just might need to become REALLY good at this!

The waiting game

After being rushed in to be informed of Eloise’s diagnosis and then told things would move fast (“days and not weeks”) things now feel relatively slow going (which is probably not that surprising as even a day feels quite a stretch at the moment). 

Eloise has started on anti-epileptic drugs (AEDs) – which have slotted into the bedtime routine very smoothly, which is brilliant. She continues to have a similar number and severity of seizures – we are really hoping they start to have an impact soon.

We have an appointment to meet with a neurosurgeon at St George’s next Monday. Apparently 4 neurosurgeons have reviewed her case (including those from Kings College Hospital). We don’t yet know their recommended plan for treatment but understand that we will be discussing this on Monday.

How do we feel?

It continues to be a rollercoaster.  We have had a couple of days where we were told to shield (so Anna had to stay home from school), and then have been told we don’t need to until our meeting on Monday – so this has all added to the challenge of the past few days. That said, Anna’s school (St Thomas of Canterbury) have been exceptionally thoughtful, caring and helpful with all the disruption.

How we feel generally depends on which hour you catch us/ask 😊.  We still feel hopeful for the long term, but feel this is going to be a marathon and that the whole situation of brain tumours is quite complex.   We really wish it could all be over very quickly, but we might be in this for a while.

That said, we do feel carried by others’ kindness and care – Anna commented at the weekend ‘Wow, people are being so kind.  Wish I could be as kind as them’.  So even in the hard times, good moments come and our lovely girls are also learning things through it!  Genuinely, thank you for reaching out and loving us – thank you for all the messages and sorry when we haven’t responded.

For those that pray…

  • Prayers for peace/calm in the waiting and for us to relax when so much of the next few weeks and months feels uncertain (e.g. we have NO idea about Christmas at the moment…!)
  • Prayers that the neurosurgeon will give us a clear recommended course of action – one that all the neurosurgeons agree on and one that we feel peaceful about
  • For Eloise’s seizures to reduce in severity and frequency

Where to begin…

Firstly apologies this post is very, very long – we don’t anticipate future posts to be so long, and sometimes we might just post one line. 

So where are we?

Background

As some of you know, over the past few months our daughter, Eloise (17 months – born 6 June 2019) has been experiencing odd ‘moments’.  They started as situations where she would run at us and suddenly cling onto us for dear life, go red in the face and breathe heavily.  We noticed these moments but thought she was doing it out of panic – children can sometimes do odd things especially when they are little and learning to walk etc.  It wasn’t until our wonderful childminder (who we will forever be indebted) mentioned to us in early September that she thought these moments might be seizures and suggested that we should get them checked out. We hadn’t contemplated these moments could be seizures (we only really thought of seizures as the grand-mal version) and we are very grateful that someone with more experience was brave enough to have a difficult conversation.

We got Eloise first checked out by a Doctor at the beginning of September.  A very long story, but after errors/delays in the system,  over the past few weeks Eloise has had an EEG, an ECG, a sleep EEG, and then on Monday had an MRI under a general anaesthetic to try to get to the bottom of the issue.  The early thinking was that Eloise had possible ‘temporal lobe epilepsy’ – and the MRI was to just check there wasn’t a structural cause (which was deemed very unlikely).

During the period all the tests took place (since September), Eloise has been having an increasing number of seizures – starting from approx. 2 per day, increasing to 5-8 per day, and now between 10-14 per day. The seizures have also become more obvious – including shaking of her limbs and looking vacant.

Diagnosis

On Wednesday morning we got the call from the Epilepsy Consultant asking us to both come in immediately to talk about the results of the MRI, which showed ‘a problem’. We weren’t expecting results for 2-3 weeks, so we were NOT expecting a call.

At the appointment we were told the news that Eloise has a brain tumour (the Dr was good at not using the word brain tumour in the first few sentences, to soften the blow).  What we know so far is that it is a ‘moderate size’ astrocytoma tumour – it appears to be on her brain, rather than ‘in’ the brain.   The seizures that Eloise have been having are a symptom of the tumour. We don’t know much more than that in terms of the detail at the moment.  We don’t know what grade it is yet (but apparently most are low-grade).

We’ve been told today (Friday 27th Nov) that the Neurosurgeons and a Multi-disciplinary team at St George’s in Tooting will be meeting to decide the course of action – mainly to decide whether to do a biopsy first (which will still require an incision in the skull) or to go straight for surgery. 

All we do know, is that this is very unusual and as our Consultant said, we are in for a rough ride over the coming period – and that things over the next few days and weeks will be very fast-paced. 

We think the long term prognosis ‘should’ be ok based on percentages (but being honest, statistics aren’t our friend at the moment.  Only approx. 400 children in the UK of any age have a brain tumour… if you look at the % odds of those it all feels very odd, especially when Eloise is also only 17 months…!)

How do we feel?

As you can probably imagine a whole mixture of emotions – shock, horror, anxiety about the coming months, concern over our capacity to keep going and support the girls, concern that Eloise already dislikes Dr’s (and that we cant explain all of this to her!)…

But also:

  • Feeling in awe of what Dr’s can do and feeling exceptionally grateful for the healthcare we do have
  • Thankful that this has happened now, and not in the ‘first wave’ of Covid-19 where MRIs under general anaesthetic were 4 months delayed.  Now, during this second wave the NHS are continuing with the tests, and also importantly, continuing with paediatric cancer surgery (which was apparently delayed earlier in the year).
    Thank you everyone for staying at home to control the virus….it’s meant people like our Eloise can have the treatment they need.
  • Grateful that Eloise is developing exceptionally well – she walked at 10 months and is chatting away and generally loving life (except the seizure moments).  She really is a kid that just smiles all the time and loves life!
  • Grateful that Mel’s work have let her have some time off over the next few weeks to attend all the appts/spend time in hospital and it also enables Eloise to be at home and reduce Covid risks. We are also grateful for Pete’s work who have also been very supportive, which will enable us to best balance life and keep going.

And also, massively thankful for the outpouring of love and care… thank you for all the offers of help.  Over the next few months we are likely to need to take you up on it 😊

For those that pray…

We have grouped them under different headings

For Eloise/Eloise’s health

  • For the meeting today – that the team would decide the best course of action
  • For Eloise to have limited side-effects of the Anti-epileptic drugs she started taking last night, and that these drugs would reduce the seizures, whilst we also work on the tumour…
  • For her not to be too distressed by all the forthcoming procedures and for her to continue to enjoy life somehow
  • For ultimately this to be gone and for Eloise to have a full and abundant life!

(Her name Eloise means ‘warrior/fighter’, and her middle name ‘Zoe’ means ‘abundant life’.  When we named her we felt the meanings were really important….and it now feels more than ever that this is the case).

For Anna

Anna is the most caring sister and one of the highlights of the past 17 months is how close the 2 girls are.  The girls just want to be together all the time – despite being 3 years apart, they adore each other.  Please pray for Anna that she doesn’t get anxious and worried about the situation and that she can still have a great and happy few months ahead.

For us

  • For us to know how to come to terms with this
  • For energy to keep caring for the girls which are at an exhausting age even at the best of times (and putting on our brave face!)
  • Seems an odd one – but parenting this situation seems a new challenge.  How to balance ‘fairness’ between the girls, caring for them both (and not side-lining one of them), not becoming an anxious parent etc etc.
  • To be close to each other, even if we are emotionally and physically exhausted.

For our family and friends

We realise this also comes at a shock for many others too.  Please pray for them too – particularly as Covid restrictions make all of this so much harder as they can’t help so easily/see Eloise.