Update on how surgery went

Thank you to everyone that prayed and sent us messages of support for Eloise’s surgery today.
We are exceptionally grateful for all the support and love. We really needed it today and are so incredibly appreciative.

Eloise underwent over 10 hours of intense surgery today and we have just met with the Neurosurgeon to go through the post-operative scans.

It is hard to full absorb all the information and implications from the surgery and scan but here goes:

  • The Neurosurgeon (Prof Mallucci) has removed all the solid tumour (Thank you Prof Conor Mallucci and team – we will be forever grateful).
  • There is a small amount of tumour boundary/”capsule” that is left on the edge of one of the main veins (~3mm at its thickest – but generally smaller).
  • The Neurosurgeon says that there isn’t any solid tumour on the scans and the remaining bit is ‘non-viable’
  • From the scans he is confident that there is no evidence of damage to the structures of the brain (We will know more when she wakes up)
  • However, the post-operative scans show that she has lots of air on the brain
  • Given that Eloise had lots of complications from having air on the brain from her last surgery, the medical team have decided that it is prudent to keep Eloise sedated and in Intensive Care for the night.
  • Therefore, Eloise is currently in Paediatric Intensive Care (PICU) and will be woken up tomorrow morning.
  • Eloise will stay in PICU until she recovers enough to be moved to the high dependency unit.
  • The Neurosurgeon noted that ETMR’s are a very aggressive and that Eloise will need radiotherapy and (probably chemotherapy) very quickly (which we knew).
  • Eloise’s MRI images and next steps will be discussed at the MDT meeting on Friday

We will post more in due course but wished to provide a quick update to all those that prayed and have asked for how Eloise is. Apologies for the brevity but, in short:

  • We are exceptionally grateful for the amazing skill and perseverance of the Neurosurgeon and his team for successfully removing all the solid tumour and (hopefully) not damaging any of the structures in Eloise’s brain.
  • We have mixed emotions about what the ‘residue’ may mean for Eloise and her prognosis and aware that this is the first step along a very thin (and statistically small) road to beating the cancer.  Unfortunately, the scans today indicated that the tumour had still grown over the past week, and therefore most likely hadn’t responded to chemotherapy.
  • We would value prayers as Eloise comes around tomorrow morning, for protection from side effects and for protection from seizures (like she had after her previous op).
  • We would value prayers for the next steps, which need to be decided upon (and acted on) very quickly.  We are conscious that next steps are very challenging for ETMRs, so prayers for wisdom as to what chemo and/or focal radiotherapy (and where!) is really needed.

Pray Pray Pray: Life changing surgery to remove Eloise’s tumour on Tuesday 16th March

[Side Note: This Blog contains information regarding some of the risks involved in Eloise’s surgery. We realise that some people may choose not to read some of the below].  

Eloise is due to have surgery at Alder Hey hospital in Liverpool this Tuesday (16th).  It will be a very long operation (all day – anything from 8-12 hours) and is an exceptionally complex and challenging procedure.  We are travelling up to Liverpool first thing tomorrow (it is ~4 hour drive), so that Eloise can be admitted early tomorrow afternoon.

Anna will stay with grandparents in an Air BnB near to the hospital.

Eloise will go down to the operating theatre just after 8am on Tuesday morning.  The anaesthetic will take roughly an hour to kick in and Eloise will then go for a pre-operative MRI. Unlike previous MRI’s (where Eloise was lying on her back) Eloise will be carefully positioned on her front – the position she will be in for the surgery.

The Neurosurgeon will then review the MRI and depending on the tumours location and size will then decide which angle to enter the brain and do the surgery from.

The Neurosurgeon and his team will then start the procedure and start to remove (de-bulk) the tumour. The Neurosurgeon will do his best to remove all of the tumour. Once he thinks he has safely removed as much of the tumour as he feels he can (hopefully all of it) Eloise will then have another (intra-operative) MRI to check to see if there is any residual tumour left in.

If the MRI shows that there is any residual tumour left in then the Neurosurgeon will take Eloise back to the operating theatre and attempt to safely remove the residual.

If you wished this to be explained more visually you may wish to watch this short clip, which shows the same Neurosurgeon who will operate on Eloise, operating on a small boy a few years ago. Please be warned that the footage shows the operation – if you are squeamish).

[Side Note: In 30% of all brain tumour operations where the neurosurgeon thinks they have successfully removed all of the tumour, post-operative MRI’s show that a residual has been left in. We feel exceptionally blessed that Eloise is being treated at Alder Hey, which has a state of the art operating theatre with an MRI machine in the operating suite. We understand that there are only a handful of operating theatres in the UK with these machines.]

After (potentially) repeating this exercise a few times to safely remove as much of the tumour as he can Eloise will have a final MRI scan.

Eloise will then go to the recovery suite with a nurse. Whilst Eloise is in the recovery suite, waiting to come around, the Neurosurgeon will sit down with us to discuss how the operation went and talk us through the final MRI images.  

We will then be taken through to the recovery ward to be with Eloise.

As noted earlier, the operation can take anything up to 12 hours and is an incredibly complex and challenging operation with some very real risks, ranging from short term visual challenges to fatal haemorrhage (but fortunately these very rarely happen).

We would hugely grateful if you could pray for Eloise for this life-changing operation.
Some of our family have very kindly set up a doodle poll to ensure that Eloise is covered in prayer throughout the day. If you wish to add your name for a 30 mins slot then you can add your name here.

Specifically we would be grateful if you could prayer for:   

  • Best Surgical Approach:
    • Please pray for wisdom for the Neurosurgeon and his team when they review the pre-operative MRI scan to determine the best approach for surgery. Please pray that they are all agreed and that there is a clear route, that reduces risks for Eloise and allows the best access the pineal region to remove the tumour.
  • Protection Against Surgical Risks:
    • Eloise’s brain tumour is located in the tectal plate/pineal region of the brain – this is deep within the brain, at the base. The location of the tumour is what makes this an exceptionally risky operation. Eloise’s tumour is currently pushing against two very risky structures which we would be grateful for prayers of protection:

      Brain Stem: Which controls Eloise’s eyes and motor functions.  Damage to this would not be great.

      Posterior Choroidal Arteries: Which are large, very important arteries in the brain, which Eloise’s tumour is pushing against. In the Neurosurgeon’s words “This is the most stressful part of the operation”. Damage to this part of the brain can be life altering.
  • Surgical Success – Complete removal of all the tumour:
    • The aim of the surgery is to remove Eloise’s tumour. All of it.
    • The evidence we have read suggest that removing all of the tumour (Gross Total Resection) is a very important factor in Eloise’s long term survival. Please pray for favour that the Neurosurgeon manages to remove all of the tumour.   Eloise will still need further focal radiotherapy and/or chemotherapy post-surgery, but for the greatest chance the whole tumour needs to be removed.
    • We would also be grateful if you could pray that the Neurosurgeon and his team are able to remove the tumour in as few times as possible.
  • Limited Side Effects:
    • This surgery is on the limits of brain surgery and is a very risky operation. It is very difficult to list all of the potential side effects, some of which are more likely than probable. We would be grateful if you could pray for a covering of protection over Eloise today and into the future. The main (common side effects) will centre around her eye sight (which is very likely), speech and mobility.
  • Strength and Peace for Us and Our Family and Friends:
    • Firstly, thank you for getting this far in this long blog! As you will have picked up – this is a life changing operation and it is extremely distressing that Eloise is in a position that she requires this operation. Please pray for us as we sign off on the operation. Please pray for our wider family as they ‘wait to hear’ from afar. Pray for Anna as she home-schools through the operation and please pray for peace to be over Eloise in the operating theatre.

We firmly believe that prayer changes things and are exceptionally grateful for everyone that continues to think and pray for us. We feel covered in prayer and are so incredibly grateful. Please don’t stop.  

Liverpool, here we come….

This week has been very full – it’s been very busy in the Royal Marsden. Eloise has had (amongst the usual medications, antibiotics and observations) an MRI (Tues), blood transfusions (Sat, Sun, Tues, Wed) , GFR Kidney Test (Thur) and has been discussed at various MDT meetings.

To end the week, Eloise got discharged late this afternoon and the four of us are all home together for the first time in three weeks.

This is a very short update as we are pretty exhausted and have a lot to sort for the week ahead, but here are a few key things:

MRI Result:
Eloise’s MRI results show that the tumour has continued to grow, but potentially at a reduced rate. In short, the chemo isn’t doing what it needs to do (shrink the tumour).

As a result of the latest MRI result, various MDT teams have concluded that the only route ahead is for Eloise to have surgery to attempt to remove as much of the tumour as possible. To cut a longer story short, due to some truly phenomenal logistical and administrative work by Eloise’s Oncologist and others at the Royal Marsden, Eloise has been offered the chance to have the surgery at Alder Hey Hospital in Liverpool. This is significant for two reasons, the first is that Alder Hey have state of the art facilities, including an MRI machine in the operating theatre, which increases the chances of safely removing the tumour. Secondly, the Neurosurgeon at Alder Hey is a very experienced Surgeon who has a very good track record of removing tumours in this difficult area. (In his words “this is on the edge of the limits of Neurosurgery).

Eloise will therefore be having surgery to remove the tumour, this Tuesday 16th March in Alder Hey Children’s Hospital in Liverpool.  We will all be travelling up to Liverpool on Monday and Eloise will be admitted on Monday to prepare for surgery on Tuesday.  The surgery will be all day, and, as can probably imagine – is very, very risky.  But we have no other options and are exceptionally grateful that Eloise is being given this opportunity.

Home for the weekend:
Eloise’s blood counts have come up, which means she has been allowed home!  We brought her home this evening – and Anna and Eloise were very pleased to see each other.  We therefore have the weekend together, with the amazing support of our ever-helpful parents.  Eloise still needs feeding via her NG tube and will have the community nurses visit, but the Marsden were keen for us to be able to get home and the girls have some time together, before Eloise goes for surgery.

We will write more in due course, but for now we just wanted to update you on this important stage.

Next Steps:

  • Sorting logistics for Liverpool – we are grateful that we have been offered accommodation.
  • Tomorrow: Eloise will have the community nurse visit to do Covid tests etc.
  • Monday: We will travel straight to Liverpool for Eloise to be admitted into Alder Hey.
  • Tuesday: Surgery by Mr Conor Mallucci and the team at Alder Hey, to remove the tumour (ideally all of it!).

For those that pray:

  • Pray for the logistics….it’s a lot to sort in a short period, whilst looking after Eloise who requires a lot of care
  • Pray for the tumour to shrink away from the tricky areas.  The chemo that Eloise has had can still have an affect over the coming days – so pray it helps make surgery easier, and indicates that the tumour still responds in some way to chemo.

We will send some more prayer points in due course – as we will need Eloise to be surrounded in prayer on Tuesday! 

Prayers for MRI, favour and wisdom

The two EMRT experts, who we emailed very late on Friday night, both got back to us over the weekend. They both provided detailed emails with some of the critical areas to consider, showed some of the scans to their local teams for further analysis and advice and kindly connected us with a Neurosurgeon in the UK.

The Neurosurgeon phoned us on Sunday to also offer his advice and assistance (he works in the NHS).

Throughout this journey we have been humbled by the speed, care and love that so many important, busy Drs and Professors have shown to us. As one of the experts highlighted – acting quickly is critical when treating ETMRs – so we are especially grateful for their fast replies.

Both experts agree that Eloise needs surgery to remove the tumour and for us to do this as soon as we can.

Tomorrow Eloise has an MRI (her 4th) to check what impact the chemotherapy has had on her tumour. Hopefully, the chemo will have stalled the growth of the tumour and ideally, it will have shrunk it. Specifically, it would be amazing if the tumour has reduced away from the brain stem, which is what is making surgery so risky.

The Royal Marsden/St George’s MDT will re-review Eloise’s case again on Friday, in light of the latest MRI, to discuss whether surgery is an option.

Eloise’s case will also be reviewed by another MDT team from Alder Hey (Liverpool) – most likely on Tuesday (tomorrow). This will be the MDT that includes the NHS Neurosurgeon who has successfully removed an ETMR.

Alongside this Eloise is now starting to rapidly loose her hair. Whilst we knew this day would come, it is hard to fully prepare yourself for seeing your daughter’s beautiful blonde hair fall out in large clumps without feeling overwhelming sad.

For those that pray:

  • Praise for the fast and detailed response from the ETMR experts.
  • Pray that the tumour has responded to the chemotherapy. Specifically, that the tumour has come away from the brain stem.
  • Pray for wisdom for the various MDT’s and specifically the neurosurgeons, who have to make complex decisions. Ideally we would like the Neurosurgeons all to agree that the tumour is operable and for them to feel confident of a gross total resection (i.e. taking it all out)
  • Pray for favour and wisdom for us as we navigate various medical advice, processes and decisions this week.
  • Pray for continued strength and energy for us to keep fighting for Eloise. Anna is now starting to really miss Eloise and finding it difficult not having her parents around, together. She is doing so well but verbalises how much she is missing Eloise and us.

Smashing this first chemo and finding ETMR experts

This week has been spent having blood transfusions, platelet transfusions, antibiotics, learning how to feed and administer medication via NG tubes (Pete and Mel learning!), and changing a lot of clothes and nappies!

Eloise continues to do brilliantly with this first cycle of chemo.  She’s running around the ward (always attached to stickman – or sometimes now a bag with her NG feed in it), dancing, playing in the playroom and continuing to act very much like a toddler.  Her temperature came down very quickly (thank you for praying!) and her seizures have improved significantly (she’s still having a lot, but they are generally very mild absences – the medication is certainly helping).  We are so grateful she’s not been vomiting (everyone asks when she last vomited, and we have to say she hasn’t once – yet!) and are genuinely impressed by how strong and resilient she is.  Her blood counts are at zero, but you wouldn’t know it 😊

Alongside this, we have been doing quite a bit of research into ETMR’s.  With it being so rare (there are only approx. 300 cases in the literature, worldwide) the evidence base is very small.  The numbers are too small for official clinical trials.  That said, we have liaised with a few survivor families (including here in the UK) and have found a couple of experts who have done research into ETMRs and successfully treated some cases (most children don’t survive a year).  We are really grateful to our oncologist and CNS nurse here at the Royal Marsden for allowing us to get in touch with these experts for their advice and for supporting us with providing Eloise’s medical information.  We’ve already had an initial response from one of the experts.  We are also getting a second opinion on surgery from another neurosurgeon who has successfully removed an ETMR here in the UK. 

So far. the key thing everyone agrees is 1) we need to act fast 2) for Eloise to have a chance of beating this, she needs surgery – so we really need surgery to be an option.  3) In due course, she’s likely to also need a type of focal radiotherapy too…

How do we feel?

  • Exceptionally grateful for the internet (to be able to connect with others that know about ETMRs), the experts who are researching this, and a supportive and fast-moving team here at the Royal Marsden.  We know these are still small chances, but we keep doing all we can to see how we can help our smart, fun-loving Eloise. 
  • Really glad that Eloise is doing so well and is having such limited side effects with her first round of chemotherapy.  Thank you to everyone for praying!  This is so important, as it potentially gives us more options (e.g. for surgery) as she continues to be strong.
  • Exhausted.  Our days are really full – from meetings with dieticians, to meeting with Dr’s, to rounds of antibiotics, blood transfusions and regular observations.  It’s a constant stream…  Sleep has really improved as we are now in a double person room, but are the only ones in the room for the past couple of nights – and this has really helped Eloise’s seizures too.
  • Conscious that over the next week some big decisions will be made for Eloise (again!).  She will have another MRI via general anaesthetic on Tuesday and then decisions will be made about next steps e.g. whether to start the second round of chemo or go for surgery now.  We are hoping the information and opinions we gather from the ‘ETMR experts’ will also really help these decisions too.

 For those that pray:

  • Praise God that Eloise continues to do so well and have limited side effects from the chemo and that she continues to have fun!  Thank God for the seizures improving (we’d like them to be completely gone, but there has been a marked improvement, so we are really grateful).  Please pray this continues!
  • Pray for all the decisions that will be made regarding Eloise’s treatment over the next few days.  Pray for divine knowledge and wisdom for all those involved – for the experts to provide clear and helpful advice, for our oncologist and for everyone to be agreed (including ourselves) on the next steps.  Pray that surgery will be possible – for the right surgeon, at the right time (very soon!)

Update: Wednesday 3rd March

We’d value prayers for Eloise as she continues through her chemo cycle.

Eloise’s blood counts have come right down, as expected, as part of her chemo regime. She now has a mild temperature and is automatically put on 2 courses of antibiotics via IV as she has zero capacity (literally zero) to fight any infection. She’s been quite weak today as a result (ie not been her normal bouncy self). She’s not eating much but is getting nutrition via her NG tube. She’s also about to have her first blood transfusion today. She’s gathering lots of beads on her beads of courage. That said she’s still been playing a bit and according to all the Drs and nurses continues to be doing remarkably well!

Her partial focal seizures have unfortunately got worse again – in severity and number. She’s come off one anti-seizure medication as it was incompatible with chemotherapy and is transitioning to a new anti-seizure medication. Please pray this new medication kicks in soon as it’s been really quite distressing seeing her get worse and suffer.

How do we feel?

  • Separated as we can’t all be together.
  • Distraught and tormented by the statistical prognosis, which, coupled with seeing Eloise be poorly from chemo and the changes in anti-seizure drugs, is quite distressing.
  • Everyday we just wish we could have a ‘normal life/normal day’. Eloise has already suffered so much and her life is a world apart from most one year olds (and bluntly far from what we had envisioned for her).
  • So proud of both Eloise and Anna. Eloise is a fighter and still charms everyone even if she’s under the weather, and Anna is doing so well and is incredibly understanding and caring. They are both absolute superstars and are showing amazing resilience and strength of character.

For those that pray:

  • For Eloise’s seizures to come down.
  • For Eloise to continue to have limited side effects and for her body to be able to handle the high dose chemotherapy – for her temperature to come down and her blood counts to bounce back quickly.

One week down…

Eloise has pretty much finished her first set of high dose chemotherapy (she’s received all 5 drugs this week, and will just repeat one of them a couple more times over various days). The full cycle is 21-28 days, but some are ‘rest days’ where other drugs to counteract the chemo are given. She has been an absolute star, taking everything in her stride and has been very obliging to all the nurses with all their routine checks.

Thankfully Eloise has so far shown little symptoms of the immediate side effects of the chemo. Despite being tethered to “stickman” (pumping fluids and chemotherapy into her 24/7), she has continued to walk around the ward, play in the playroom and go outside in the garden everyday. What a hero.

However, we know that some of the side effects (such as potential nerve pain, the loss of her beautiful blonde hair and ulcers and a sore mouth) will only happen in the coming week(s).

Eloise has lost some of her appetite and, as result, has had a NG tube (tube running from her nose to her stomach) fitted so that we can provide her additional food to supplement her intake.

The biggest news of this week though is Eloise’s lumber puncture results, which showed that there is currently no sign that the cancer has spread from the tumour into her spinal fluid. Whilst this was expected (90% of Embryonal tumours don’t spread) – statistics have not been our friend on the journey so far and this is a big relief and one result to be hugely thankful for.

As a small, but important, aside – we have both also been given the first dose of the Covid vaccine – which we are very thankful for too!

For those that pray:

  • Praise that the cancer has not spread beyond the one tumour
  • Praise that Eloise has reacted really well to a tough week, been incredibly resilient and continued to be a charmer and delight
  • Please pray for protection from the side effects of the chemo in the coming week(s)
  • Please pray that Eloise doesn’t get too tired and can sleep well. (Eloise is on a shared ward, which has made sleep more challenging at times, plus she needs waking every two hours for observations/nappy change due to all the fluids and chemo)
  • Prayers of praise that we (Pete and Mel individually) have each had a great day with Anna this weekend
  • Please keep praying that the chemo will work and dramatically shrink the tumour – we have very limited options available if the chemo doesn’t
  • Please ultimately pray for the total obliteration of the tumour! With the odds as they are, we are needing a miracle

Let’s shrink this tumour!

Thank you for all the messages of support, love and follow up – including those checking in to see how Anna got on going back to school. We thought we’d share a quick update to let you know …

Eloise has started her high-dose chemotherapy protocol. It’s given via her Hickman line, round the clock, alongside fluids and various other meds to counteract the side effects of her chemotherapy. We have decided to call the machine that pumps all her fluids her ‘Stickman’ as she is attached to it 24/7.

Pete stayed with her overnight on the ward. The ward is wonderful with lovely staff and a pleasant atmosphere. Eloise has enjoyed going to the playroom (with Stickman in tow) and watching her favourite programme Raa Raa lion.

Eloise is pretty exhausted as all the chemo, observations etc are round the clock (including requiring 2 hourly nappy changes, due to all the fluids etc), so prayers for sleep for her (and Pete) would be really appreciated. We plan to each do a few nights on the ward and then switch. Eloise continues to smile and she copes so well with all the disruption. She really is a superstar.

We wait to see how Eloise reacts to the various chemo drugs – please continue to pray she doesn’t have too many side effects. She’s started to go off her food so we will see how the next few days and weeks go.

Anna loved going back to school yesterday! Thank you to those of you that prayed. We are so proud of Anna – throughout all of this, she has been exceptionally mature, kind, caring and generally fantastic.

For those that pray:

Many of the prayer points remain the same as before, but the key ones continue to be:

  • For the chemotherapy to work and shrink the tumour – to particularly shrink it away from the brain stem, so that surgery is a viable option.
  • For Eloise to not have too many side effects from the chemotherapy and for protection from infection.

Chemotherapy starts tomorrow

After a full week of MRI scans, appointments, tests and the operation for the Hickman line and lumber puncture, we are now gearing up for Eloise to start chemotherapy tomorrow.

The Hickman line and lumber puncture were done on Thursday – thank you to those of you who prayed.  The operation was done in the morning and although she was very ‘hangry’ before, Eloise pushed through and was a superstar!  We went home late Thursday night, and then went into the Royal Marsden on Friday for the kidney test and the appointment with the oncologist.  Eloise has been fantastic at putting up with all the general anaesethics, the Hickman line in her body, the tests etc.  She has been tired and isn’t 100% but when you think about what she has gone through, she is doing amazingly – still managing to sing, dance and play with her sister Anna.

The appointment with the oncologist on Friday confirmed that Eloise’s tumour is an ETMR.  The prognosis is not good at all, but as we clarified with the oncologist – we are starting the high-dose chemotherapy in the hope that it will shrink the tumour so that surgery can be done, and in the hope that we can ‘cure’ it.   The MRI scan showed that the tumour had continued to grow at a similar rate as between the first two scans (but not exponential, so that’s good), and shows only the one tumour.  Unfortunately as the tumour is attached to the brain stem, surgery is not an option at this point – and therefore we really need the chemotherapy to shrink the tumour away from the inoperable area, so that surgery can be done.

Tomorrow Eloise will start the high-dose chemotherapy at the Royal Marsden.  She will be an in-patient for several weeks (prob 5-6 weeks if all goes to plan).  Today is our last day together as a family for many weeks/months.  It’s a very weird time.

Update: We wrote this blog earlier today (Sunday), but we again ended up in the Royal Surrey today as Eloise’s Hickman line needed looking at.  Eloise and Mel ended up spending a few hours in the hospital and were told she needed a set of antibiotics via IV then, and then every 12 hours (via IV).  So instead of staying in and being then transferred to the Marsden, we opted to take her home and have the last few hours of the day together (for our last family day and a walk as we’d promised Anna), and we will take her in again at 1.30am for her next dose, and then home, and then take her in for her audiology appt and then the starting of chemo.

How do we feel?

  • It’s now starting to take its toll on us – stress levels are high and plans keep changing.  It certainly feels brutal and relentless – and its horrible to see our sweet Eloise be put through so much (and hate many of the procedures), every single day.   It’s sad to have had our last few family days together (before Eloise is a long-term in-patient), snatched away from us, and it’s hard feeling like we keep letting Anna down and are struggling to follow through on the few things we say we will do.
  • It is frightening that Eloise’s prognosis is so poor, but we are holding onto the fact that the Dr’s are doing this in the hope (no matter how statistically small it is) that they can cure the tumour.  At the same time we know we have an All-powerful God who can and sometimes does do miracles.  We continue to hold onto Him.
  • A whole mixture of other things!  We cherish each moment we have as a family, but they make us feel sad too.  It just feels so unfair on both of our girls.

For those that pray:

  • Pray for Eloise to be able to start the chemotherapy and that it would work!  That it would drastically shrink the tumour – and particularly shrink it away from the brain stem in order for surgery to be a feasible option.
  • For Eloise herself, as she gets put through such toxic high-dose chemotherapy.  For her to not be too sick, ill and not have too many side-effects.  For massive protection from infection – we understand many children on this protocol can end up in intensive care due to infection – so please pray for protection.
  • For Anna as she goes back to school and adjusts to Eloise (and at least one of us) being in hospital all the time.  Following chats with Eloise’s oncologists, we are really grateful that Anna’s school are allowing her to come in as we will be in hospital with Eloise.  We are so glad Anna will be able to have some respite from the chaos at home, see some classmates and have some vague normality – and not be at home on her own without her sister around every hour of every day.  Please pray she doesn’t miss Eloise too much and adjusts well to being back at school.  We are also massively grateful to our parents who are helping out with looking after Anna and keeping things ticking over at home.
  • For renewed energy to begin this next step.  Our reserves are low, so pray we can find renewed and deeper strength to keep going physically, mentally and emotionally.
  • For wider family and friends – for Eloise’s grandparents, cousins, aunts, uncles, great grandparents etc etc. Please pray for comfort, faith and emotional and physical strength as they continue to journey with us and support us.

Update Wednesday 17th

It’s been a bit of a full few days. 

On Sunday Eloise was dedicated – we are so grateful to those of you who joined online to celebrate and publically dedicate Eloise.  It really was a blessing to be able to do this before Eloise starts on her next phase of treatment.  A massive thank you to Emmaus Road for everything they did to make it happen and to go above and beyond to make it special.  It was really memorable and very special. 

Straight after the dedication (half an hour later) we were in the Royal Surrey for pre-op blood tests and Covid tests.

Yesterday, Tuesday, Eloise spent the day at the Royal Marsden to have another MRI (via general anaesethic).   She did brilliantly with her fasting (from 6am until surgery at 3pm) and really enjoyed all the toys in the Royal Marsden’s amazing playroom.

Today, Eloise had to fast again, as she was due to have the small operation to insert her Hickman line and have a lumber puncture at St George’s.  Today was more upsetting for Eloise as she was very hungry and tired, having hardly slept yesterday and having had very little food in the past couple of days.  Having blood tests when she is tired and exceptionally hungry is pretty hard going.  Unfortunately after being there (and fasting) all morning, we were told that the procedures would need to be moved to tomorrow (as Eloise is an emergency case, they are trying to slot her in when there is a cancellation). So we’ve come home and will go in first thing tomorrow.

The Hickman Line needs to be done tomorrow so that it can be used for kidney tests on Friday morning.

How do we feel?

  • Exceptionally grateful for a special dedication and for all those that joined to pray for Eloise afterwards.
  • Really sad that Eloise will have to fast tomorrow again (3rd day running) and very keen for the procedures to be done!  It’s quite hard to explain to a toddler why you are denying them so much food and having to do so many blood tests.
  • Grateful that the Royal Marsden is a great hospital with lovely facilities.
  • Being honest, sometimes rather jealous of the other parents (at St George’s) who are bringing their children in for  more ‘routine’ procedures for non-life threatening conditions.  I do sometimes just wish we were in hospital for something much more minor and that we could know we were going home (for good) in a few days.  In some ways, the Royal Marsden as a cancer hospital is easier to be in – desperately sad, but equally nice to meet people/parents/children who are going through some similar experiences.

For those that pray

  • For the operation to be done first thing tomorrow morning – so Eloise doesn’t need to fast too long (we don’t have a specific time, but have to keep fasting in the hope she can be squeezed in).
  • For the other appointments, including the kidney test, audiology appointment and meeting with a neurologist.  But in particular, for the meeting with the oncologist to discuss the MRI results and to consent to high-dose chemotherapy starting on Monday.