Yesterday, Eloise’s school (Rydes Hill Preparatory School and Nursery) marked the 2 year anniversary of Eloise’s tumour being removed, by awarding her a special girdle in the main school assembly. It was so honouring of the school.
The Headteacher explained to the whole school a little of what Eloise had been through, calling her a ‘real-life superhero’ and showing all of Eloise’s beads (over 1,000 of them).
Eloise then proudly walked onto stage and collected her special girdle – made specially for her.
It was an emotional moment (we were allowed to come and watch). We felt so honoured by the school and were utterly proud of our darling girl (and she walked so confidently onto the stage not phased in the slightest!). She really is a real-life superhero. She has been through more than most of us can begin to imagine, but here she is, defying the odds, enjoying life and fighting on.
At the end of the assembly, the school then prayed for Eloise. What a blessing.
A massive thanks to the school for everything they have done to support, champion and love Eloise. Eloise has come on leaps and bounds since being there and simply loves going to nursery. Keep going Eloise!!!
2 years ago tomorrow Eloise had surgery to remove her brain tumour. A high grade cancerous tumour in the middle of her brain (literally) that neurosurgeons across London and the South East said they were unable to remove … but on March 16th 2021 in Liverpool, despite the odds, Eloise had her tumour removed.
That day is engrained in our memory – much of it is still very vivid. 12 hours after Eloise was put under general anaesthetic we were able to see her in intensive care (during Covid lockdown) and were told it was only a Near Total Resection. However, the following morning the neurosurgeon, Mr Mallucci, came into intensive care and told us that although he thought he’d left a small amount of the tumour (as it was wrapped around the vein of Gallen in the middle of her brain) the radiologists had looked at the scans and said they couldn’t see any tumour on the scan… and it was a Gross Total Resection. To this day we are still in awe of this miracle.
Many people have asked how our perspective has changed through all of this. In many ways we are quite different to ‘pre-Eloises brain cancer’. So here are a few of our reflections:
Unsurprisingly, we certainly live for the moment, enjoy the simple things and generally ‘plan a little less’. I think we’ve had to face the hard reality that we are not in (complete?) control of the day ahead or our life overall, and try to enjoy the moment that’s in front of us.
We generally keep our expectations pretty low (to avoid disappointment) but have equally found there to be so much enjoyment and freedom in this (a bit like many of us did during Covid lockdowns?). I hope we keep much of this attitude of there being ‘less pressure to do/achieve’ as we’ve found this to be a much healthier and more gently satisfying way to live.
Several people have asked about Mel’s ‘career’. I (Mel) loved my work in international development. It was my passion, ‘calling’ and was the thing that would get me up in the morning. Since being on a long term sabbatical from the FCDO and caring for Eloise I’ve had days when I’ve missed the interesting nature of the work, the intellectual stimulation and having colleagues/being part of a team. But I don’t feel bitter about this in the slightest (genuinely) – the circumstance with Eloise has made me grateful for all the opportunities I did have to travel the world and do interesting work pre-paediatric cancer.
Life is not linear – it’s much more seasonal and even circular. I’m in a different season now – and either I can choose to embrace the season I’m in (even if it’s not my first choice) or push against it and be frustrated. I’m choosing the first (most days!). And I also now see the great things in this new season – most notably being less ‘always busy’ and having much, much more time with our wonderful girls.
Measuring impact differently (this perhaps links in with the above ‘Career’ reflection). Much of our Western society values our ‘impact’ and apparent ‘success’ (hence the moving forward/linear sense of progression). To be honest this type of conversation has wound me up at times over the last couple of years. It appears to us to be a very ‘privileged mindset’. Faithfulness (alongside a whole bunch of other stuff) is what God requires – not impact (that’s up to Him). Being faithful with whatever lays before you – whether that be big or seemingly small (like just caring for the one child in front of you). And actually being faithful in the small things can be a lot, lot harder than the grander things that can appear externally as more ‘impactful’. Perhaps say “thank you” or “well done” to someone you know who is just getting on with the stuff that needs to be done (but is perhaps perceived as “less impactful”) …
The situation with Eloise has written off a lot of things for us and life looks quite different to how we’d envisioned it. We aren’t able to travel abroad in the same way (which was a key part of our life), work/not working is different and we are very much ‘staying in Guildford’ for the foreseeable future (we didn’t necessarily envision this). Again, we try not to be frustrated by this. We came across a quote that resonates with us ‘We often think life is about the choices we make, but often life is about the choices we don’t make’ (in our case, having a toddler with brain cancer). The part we can play is seeking Godly wisdom to make the best choices with the ones we have in front of us. We try our best to do this.
We have greater compassion for families of children with special/additional needs and for carers more generally. Not only is it challenging physically, mentally and emotionally it is very lonely bringing up children with additional needs!
For example, children with special needs can’t do the same as their peers so social situations can be challenging or impossible. For example, at a soft play, parents might let their kids run off whilst they have a coffee and a chat, but parents of kids with special needs often can’t do that – they can’t leave their child (and that’s if they can even bring their child to the soft play in the first place!). So the parents miss out on the conversation and can feel isolated.
Furthermore, everything takes a lot more planning, thought and organisation. E.g. Can the child sit in that chair (or does it need to be adapted), is there space to change your child, do they need different food/a feed machine (can they charge their feed machine, do they have syringes etc.), can the child engage in the activities, will this be too much of a sensory overload, is this situation an infection risk (an issue for children with various autoimmune disorders), can the child even get in a car (e.g. Eloise used to hate even a short car journey – it clearly made her feel very poorly). The list goes on and on…
If you have friends with children with any type of special needs – look out for them. Like a Swan, they might appear ok on the surface but underneath they may be paddling ferociously.
Intentional input pays off, but is exhausting! Eloise has missed out on huge sections of her development and has numerous ‘small’ challenges. To plug these gaps and help her develop, her health professionals (and us!) have to be incredibly intentional about teaching her. Eloise isn’t automatically just learning how to jump – we have to teach her lots of exercises that help her brain improve coordination and balance alongside build up her physical strength to be able to do this. We (and health professionals and nursery staff) have had to teach and train her a lot more than for a ‘normal child’. For Eloise, this intentional input really pays off, but requires significant time and energy. However, it is also emotionally exhausting – it can be sad/distressing, for us and her, that she can’t just automatically do what other children can! It’s also just weird – naturally you expect your child to just be able to do certain things, but you realise that seemingly simple things are actually quite complex to learn.
We also have sadness that things are so challenging for Eloise. Some days this deep sadness is just there – we feel sad that so much has been stolen from Eloise… Other days we are happy and grateful for how well she is doing – other days sadness is the main emotion. It’s an odd tension.
But this sadness is coupled with a continual reminder (by virtue of Eloise being with us) that God can do the miraculous. He has done countless massive miracles over the last 2.5 years and these are a reminder that anything is possible with God. So we hold onto these reminders, praying and hoping that God will continue to do miracles in Eloise’s life. Praying that Eloise is not hindered by the after effects of this brain cancer or its treatment – that she lives up to her God-given name and has life in abundance!
For those that pray:
Give thanks for the countless miracles that God has done to get Eloise to this point.
Pray for families with children with additional needs – pray for strength and support structures to enable them to keep going every single day.
Pray for Eloise – for her atypical absence seizures and tremor to end, for her coordination, memory, her eyes, her endocrinology, her hydrocephalus, her processing speed and much more (see previous blogs). Pray she grows to be everything God intended her to be!
Give thanks to God for all the prayers and support we and Eloise have received
And here is a little reminder of the miracle two years ago today – an MRI image of Eloise’s brain on the morning with the tumour (circled), before it was removed. (Note: the cursor is placed where the neurosurgeon entered to get to the tumour!)
Following Eloise’s MRI in late January, we had a phone consultation with the neurosurgeon last week to go over the results. Wonderfully Eloise’s scan showed no recurrence of the tumour and even some improvements to some of the peripheral CSF fluid levels.
This is simply brilliant news and we are delighted. This feels like a special landmark. Due to the rare nature of ETMRs and the lack of data, it is hard to benchmark milestones but approaching two years NED, it appears the odds are now tipping in Eloise’s favour.
The positive scan results have also been mirrored by Eloise’s overall health and energy in 2023. Eloise’s energy levels have rapidly improved, aided by intensive physio sessions, which has resulted in previously unthinkable activities now being attempted with enthusiasm (such as learning how to use a scooter and a swing – both gently, but amazing nonetheless). It’s been a very encouraging start to 2023 and one we hope will continue for a long time to come.
Thank you for all your continued support and prayers, we are so grateful.
For those that pray:
Give thanks for the fantastic MRI result!
Please continue to pray that Eloise goes from strength to strength and that she continues to develop and make improvements.
Please continue to pray for the challenges Eloise faces, such as her seizures, tremor and sensory processing challenges. Pray that these lessen and that they don’t impact her life too much.
It’s been a full few weeks but overall Eloise has been doing excellently. She’s really made some progress and has turned the corner recently… she has much much, more energy than she’s had for the past 2 years and her sassy character is coming out.
This also means we are dealing with a few more toddler tantrums – for example, she now regularly says to us ‘No, I’m playing’ (because she is). For the first time in years, she’s actually playing of her own volition rather than us doing anything we can to get her to play/do something! This is so encouraging and also interesting both for her and for us….
Eloise’s language is still quite behind but she’s making progress. It’s helpful having a lovely aunt who’s a speech and language therapist 😀. Eloise’s memory and sensory processing for certain things continues to be tricky but has been vastly improving as we wean off sodium valproate.
Eloise has been having a couple of physio sessions each week which has been excellent to build muscle strength. She’s walking further than she has done before which is also great for her independence and confidence too.
And Eloise has been loving her nursery mornings. She is very happy to give us a big hug and wave goodbye. Seeing her love going to nursery and taking it so seriously is such a delight – it’s truly part of her identity. It is clear she feels loved, cared for, and perhaps the closest she has to experiencing a ‘normal childhood’.
It’s also great that we’ve just been told that the Council has approved Eloise being pulled back/deferred a year, in the hope she can catch up a little more before starting school (so she will now start in Sept 2024 rather than Sept 2023). So she has 18 months more of nursery! Yay!
That said Eloise continues to have challenges. In particular:
Her seizures have continued. They are short absences where Eloise isn’t conscious or responsive (they can be a few seconds or sometimes are up to a minute – the longer ones can actually feel quite a long time). They are quite inconsistent too – she might not have any (that we see) for a few days, then might have several in the same day/couple of days.
Her tremor is also continuing and is also quite inconsistent. Some days hardly there, others it’s pretty bad. It’s always a lot worse after waking up and for quite a while she is very wobbly! Poor girl.
A meeting we had with the ophthalmologist was positive but there are quite a few issues that we haven’t yet gotten to the bottom of and/or can do much about (in terms of the eye-brain connection).
We have yet to ascertain how her endocrinology is affected. Her growth has massively been stalled so she’s now very small for her age (she started off very tall!) but we will see if/how that improves over the coming months. There are several areas of the brain that have been targeted by proton/surgery that impact endocrinology – these impact growth, thyroid functioning etc etc. Fortunately, this is an area where there is a lot more that can be done to help.
Each appointment with specialists is odd – they are amazed and delighted that Eloise is defying the odds and doing so well and functioning as she is (she’s walking, talking, eating, chatting, making friends etc.) but at the same time we also have quite a few issues to iron out in almost all medical areas.
Despite all the challenges Eloise lives with every day, she loves life. She is happiest when she and Anna (and Kobe) are at home playing on their hobby horses, making dens, cooking (she loves helping with every single meal), doing crafts and doing various versions of make-believe play. The girls continue to adore each other.
On Friday, Eloise has another MRI under general anaesthetic (GA). This time her shunt is likely to be adjusted to a different pressure if the scan shows low pressure again. She will also have endocrinology bloods done while she is under. After her last GA, just before Christmas, Eloise had approximately 10 seizures the following day (which was odd/scary as she’s had over 65 GAs before and has never had this reaction before!). Please pray this doesn’t happen. We are more aware and hopefully prepared this time, if it does.
For those that pray:
Give thanks that Eloise is a walking miracle and that doctors and specialists are delighted with how she is doing. In Anna’s words “All the Doctors thought Eloise was going to die, but thousands of people prayed and Jesus saved her! We are so lucky she didn’t die”. (We’ve never directly told Anna this but recently she has started to put it all together in her own way and words).
Pray for Eloise’s MRI – pray that it shows that she is NED!!!
Pray that the shunt adjustment (ie adjusting the pressure/fluid in the brain) is ok and doesn’t cause any other issues.
Pray against any seizures after the GA.
Pray that the scarring and calcification haven’t worsened and have improved/reduced.
Pray that all the challenges that Eloise faces (listed above) are dealt with and that Eloise doesn’t always have to live with these hurdles. Pray that Eloise continues to come on in leaps and bounds – pray for full and complete healing.
The December in-and-out of hospital continued, with Eloise getting both a UTI and viral infection (at the same time) during the week running up to Christmas. But after another night in hospital, some IV antibiotics and some great care, we were home and had a lovely Christmas with Mel’s family (at Mel’s Mum’s house).
We had some very special moments and the girls loved all the Christmas magic and fun. We even had Mel’s Grandparents with us at Mel’s Mum’s for Christmas. Sadly Mel’s Grandpa passed away a couple of days after we left.
We’ve had some lovely family time but unfortunately yesterday/today Eloise has picked up another infection so we are back in hospital. Looks like it’s tonsillitis so we hope to be able to go home later with some oral antibiotics.
Next week Eloise has a range of appointments- an opthalmologist appt at St George’s, an endocrinology appt at The Royal Marsden and an epilepsy consultant at the Royal Surrey. Hopefully she will be fully recovered by then and also be able to return to nursery later next week.
How do we feel?
Grateful that Eloise has made it to 2023! We actually started to believe this Christmas that it might not be Eloise’s last and that we could look forward to future ones with her… that’s actually quite remarkable.
Grateful that the issues we are currently dealing with are ‘more normal childhood’ illnesses (even if it impacts Eloise more severely) and even if it requires more hospital trips.
Grateful for the kind hospital staff. We feel bad having to come in each time (we get told to come in as it’s the protocol) and each time hope to avoid it, but the staff are so kind nonetheless.
Weary – it was a lovely Christmas but it’s been flanked with illness. Anna is also asking lots of very pertinent questions about childhood cancer, death, and everything in between. Unusual but privileged conversations to be having with a 6-year-old.
For those that pray:
Give thanks that Eloise made it to 2023! Below is a picture of her on a rocking horse at Mel’s Mum’s house. She is finally strong enough to sit on it without someone holding her! Eloise is getting stronger! Praise God!
Give thanks that the last scan showed she was NED. Pray the next one (end of Jan) continues to show that too.
Pray for wisdom with all the upcoming appts.
Pray for Mel’s extended family as they grieve the loss of Great Grandpa. A lovely man who when he said goodbye to us on Tuesday, prayed a blessing over Anna and Eloise. What a heritage and we are so grateful to him and Mel’s Nanna
Eloise recovered symptomatically from Flu A last week and by the weekend was doing well again. Thank you to those of you who prayed. Eloise actually had the non-live flu vaccine (a jab) a couple of days before she was admitted to hospital with flu, so the jab might have just helped her get over it a bit quicker (even if it didn’t prevent her from getting it. We also know it wasn’t a positive test because of the jab – as it was non-live vaccine).
We were therefore really grateful Eloise was able to have her port removed at St George’s on Tuesday, as planned. Eloise has been surprisingly sore with the scarring from surgery (the surgeon said it was unusually tricky to remove the port), but Eloise is happy and active. Unfortunately for 24 hours post-surgery Eloise started having a lot of seizures (still short ones), but a sudden large increase. The working theory is that she had a response to the general anaesethic (GA) – which is slightly odd as she’s never had a reaction before (and she’s had between 65-70 GAs before and they have generally had the opposite impact, reducing seizures). But it just shows we can never take anything for granted. One for us to watch for future GA’s – the next being planned for her next MRI at end of January…Despite this, we were grateful Eloise recovered from the seizures and didn’t need rescue medication. She is back to her happy and very cheeky self! A true warrior and champion. 😊
We just had our last community nurse visit (unless her surgery scar doesn’t seal over the weekend, in which case we might get an extra final visit) which feels like quite a marker in the sand at the end of 2022. The Children’s Community Nurses have been fabulous over the past 2 years – caring for Eloise and us all and trying to visit at times that don’t interfere with Eloise’s/our life too much. In a very strange way, we will miss them – and are very grateful to them.
Eloise unfortunately missed her ‘Angels’ Nativity as it was at the same time as she had her port surgery, but Rydes Hill School were fantastic as ever and let me come and watch the dress rehearsal (Eloise wouldn’t have known the difference!). A really special memory and Eloise seemed to really enjoy it.
We are so grateful that we are able to celebrate this Christmas as a family. We will never take it for granted. Angel nativity shows that Eloise statistically should never have been in, Christmas parties, and being together and enjoying all the fun of Christmas – what a blessing.
For those that pray:
Give thanks that Eloise’s port was removed
Give thanks that Eloise recovered from the flu and is back to her well and happy self
Pray for seizure control – for continued wisdom on how best to treat going forward
Pray for protection from infection over the Christmas period.
Pray we don’t need any unplanned hospital trips and that Eloise (and Anna) can have an extra special Christmas this year – with lots of smiles, laughter, joy and peace
We’ve been silent for the past few weeks but not because it’s been quiet – it’s been an extreme winter infection hospital admission yo-yo.
Eloise has had 4 admissions into our local hospital in the past 6 weeks or so with infections.
3 weeks ago Eloise had a few days/nights in hospital following another fever and poor observations (racing heart, heightened blood pressure and low O2). Tests showed she had 2 viruses (one being RSV – which is pretty nasty), plus a secondary bacterial infection in one of her lungs. As a result she was pretty poorly!
She had a few days of IV infusions and then had oral antibiotics back at home. Whilst in hospital she had a chest X-ray which coincidentally showed that her port had ‘moved down’ and should be removed sooner rather than later.
She recovered from this bout of illness and was then doing really well. The best she’d ever been for 2 years, which is really encouraging.
Eloise when she is going “well”
This ‘well’ period lasted about 1.5 weeks, during which Eloise enjoyed nursery and has also done a few sessions of intense physio to try and get her physically stronger. Unfortunately her short seizures have continued averaging about one per day, but are significantly worse when she’s poorly. We have had many discussions with consultants about how to deal with this and this is a continual work in progress, but for now nothing significantly will be changed in terms of medication etc. We still want to wean Eloise off sodium valproate (her final remaining chemo drug – which also happens to be an anti-seizure drug) because it’s been causing Eloise brain fog. A very tricky balance. This continues to be a very, very long road – as we all know, Eloise’s situation is a very complex case!
Unfortunately after a meeting with the epilepsy consultant and neurologist yesterday, Eloise spiked another temp and had poor obs again. After another night in hospital and more tests this morning it’s shown that Eloise now has Flu A. We’ve been sent home but have to go back in if she deteriorates. Without being able to take Calpol or Ibuprofen it’s a bit brutal for immunocompromised kiddies to ride out all these nasty infections.
Among this, she/we’ve also had Eloise’s EHCP review and accompanying assessments (speech and language, physio, OT etc) with the support of Eloise’s fabulous school. We are hoping to pull her back a year so she has another year of nursery – hopefully with less time spent in hospital and more time to be a ‘normal’ kid and catch up with some of her development. She is making great improvements with her development (she is a VERY determined learner in all areas) but each infection sets her back and she still has a long way to go on every front. It feels like a constant game of cat and mouse. If you ever wonder what parents with complex needs kid spend their time doing, all we can say is it is very full-on, unpredictable, chaotic, intense and with little/no respite… Everything we do has to be so ‘intentional’ and worked through.
In theory, Eloise is due to have minor surgery on Tuesday at St George’s to have her port removed – but we will have to see how she gets on with fighting off her flu A to see if she is well enough.
For those that pray:
Please pray for protection for her when she has these infections – such as flu at the moment. It impacts her neurologically. The first symptom is her shaking/tremor and her seizures significantly worsen.
Pray she recovers from this flu and can somehow have the surgery on Tuesday (she needs a GA and therefore needs her airways to be ok).
Pray for seizure control! Give thanks that she has a great epilepsy consultant who champions Eloise’s cause. Pray for wisdom on the best course of action in the short, medium and long term. The seizures seem to be caused by structural changes, such as the calcification in her brain.
Pray for energy. The regular but unplanned hospital admissions and subsequent efforts to regain lost muscle mass and strength (and re-potty train) absorb a lot of Eloises and our energy. It has certainly felt very unpredictable and chaotic these past few weeks – trying to have a “normal” life and keeping ‘the show on the road’ whilst being in and out of hospital is hard. Pray for additional resilience, strength, energy and peace for us all as a family.
Give thanks that on the BIG front of fighting ETMR brain cancer Eloise is on the winning side! Give thanks for the care that Eloise continues to receive from so many doctors, nurses and numerous health professionals. We are incredibly grateful.
The scan showed no evidence of any tumour regrowth! Hallelujah and … phew!
It’s been a pretty hectic and stressful past couple of weeks and these were the lines we wanted to hear. We are extremely grateful to the NHS for their combined and prompt response to Eloise’s seizures restarting, resulting in rapid appointments with:
An epilepsy consultant
An MRI scan
A Neurosurgeon
A review of the results by a Neuro-radiologist
An EEG test
Eloise’s scans being discussed at the Paediatric-Neuro-Oncologist MDT meeting
A short call with an Oncologist (full appointment happening this coming week)
In summary, Eloise’s scan shows no evidence of the cancer returning but does show other changes. These include a small build-up of fluid (which in the words of the excellent neurosurgeon “isn’t very exciting”) and some increased marks/lesions of calcification in another area of Eloise’s brain. There isn’t a clear consensus on why Eloise’s seizures suddenly returned or what the increased calcification in Eloise’s brain means. It is potentially a result of Proton beam therapy but given it is such a new treatment and not normally given to children so young, there is no data to back this up.
For now, we will slow down Eloise’s drug-weaning schedule, to give the brain more time to get used to the changes, continue to watch how she does and monitor changes/lesions in future scans. We need her to come off the sodium valproate so the next few months will be a long process (and hoping that somehow she can, without seizures starting). We will also see what the EEG results show.
How do we feel?
So relieved that the cancer hasn’t returned. So, so grateful! Ultimately this is the big win.
Grateful for the love and dedication for Eloise by all the staff involved (a surgery slot with the neurosurgeon had been penciled in for Eloise just in case she needed it – which she didn’t – showing both the dedication and also the recognition of the potential seriousness).
Thankful that Eloise doesn’t appear to have had a seizure for the past week.
Conscious that we might be in this (and other) ambiguous situations for many years to come – medical professionals won’t know for definite what is causing changes/any new symptoms, and can’t necessarily treat the issues. Brain tumours and being on the cutting edge of new treatments (that have done their job in killing the cancer!) cause other issues.
For those that pray
Give thanks that there is No Evidence of Disease!
Give thanks for all the love, care and prayers we have received from the NHS, family, friends, and colleagues
Give thanks that Eloise is getting stronger and enjoying life, and that her seizures appear to have stopped over the last few days. Pray they continue to stay away.
Pray her brain heals and that it is protected from side effects from all the changes and treatment
Pray for wisdom, patience and peace as we work out the best path to reduced drugs, improved health and liaising with various health professionals
It’s been a busy and hugely challenging week, where Eloise has had seizures almost everyday.
The reoccurrence of Eloise’s seizures have accelerated a lot of conversations, hospital admissions and tests.
Yesterday we saw Eloise’s Epilepsy consultant, who graciously gave us a lot of her time for us to pepper her with a lot of our questions.
Whilst the consultant was expecting Eloise to potentially have seizures again, she perhaps wasn’t expecting them at this time, especially with Eloise on such high dosages of anti-epileptic drugs. Unfortunately the consultant is not convinced that the seizures are a result of reducing Eloise’s Sodium Valporate and more likely to be as a result of surgery/scarring or something irritating her brain (eg a tumour). Mercifully the consultant noted that the seizures, in their current form, are unlikely to be damaging for Eloise in the short term. Eloise has been referred on for another EEG test – to see if we can identify the area of the brain affected.
As a result of the meeting, we will make some minor tweaks to Eloise’s meds while we wait for the results of her MRI and wait for advice from a new neurologist at St George’s. Seizure control is looking like it might be very tricky to manage (no matter the underlying cause).
The MRI has been brought forward from mid December to this Monday morning (Oct 31st). We will then meet with the Neurosurgeon on Monday afternoon (a routine appointment that was already in the diary). The scan and Eloise’s case will be discussed at the MDT meeting on Friday and we will then speak with Eloise’s Oncologist in the afternoon.
Some of these appointments were routine appointments that have been booked in for a while but others were not and it feels like a rapid acceleration of concern and medical intervention.
The return of seizures has been extremely disappointing and traumatic for all of us and we had hoped that we might get some level of assurance and comfort from meeting with the epilepsy consultant. However, we ultimately left feeling concerned and distressed about how disconcerted she (and the other medical professionals) are, evidenced by the MRI being brought forward. Everyone is just ‘hoping the MRI doesn’t show any tumour recurrence’ and the seizures are from scarring, but the language being used by medical professionals is certainly not as confident as we’d like…
This is not a situation we wanted to be in and it is very challenging and anxiety inducing being fast tracked for tests alongside not knowing if the seizures will be controlled.
Please pray for us in the build up to and results of this very important scan.
Specifically:
Pray for a clear MRI scan that shows NED and no new issues – to be honest this feels very nerve wracking right now.
Pray for peace for us all, including Anna and our wider family this week.
Pray that we have a helpful meeting with the Neurosurgeon on Monday
Pray that we get clarity and peace on the cause of the seizures and that we can treat and control the seizures.
Pray the seizures stop!
Pray that Eloise can enjoy life in all its fullness and that these seizures don’t slow down her recovery or ability to make healthy friendships at nursery
Thank you for those that have been praying. It was a challenging day yesterday but Eloise is home and the CT scan showed no hydrocephalus. We had a nerve racking few hours as were told the CT scan showed ‘pathological changes’ that needed comparing with previous scans, so these were sent to St George’s. A neurosurgeon looked at them and said there is nothing acutely concerning and no obvious changes. So nothing to do for now and we will wait to see how Eloise does while we wait for the next MRI.
Today Eloise had a very short episode again. Please pray these stop and we can work out how best to support her. She’s on 2 other very strong anti-epileptics in addition to the sodium valproate (that she had at a super charged dose for chemo purposes but also acts as an anti-epileptic).
For those that pray:
Pray for wisdom for the meetings we have on Wednesday with the oncologist and epilepsy consultant
Eloise Zoe 