It’s been a real treat to have a week at home with both girls – albeit punctured with appointments and some nights in hospital. The girls have enjoyed Easter activities, playing in the (sunny) garden and just generally getting time with one another. Eloise continues to recover exceptionally well from all her operations and is now walking around very well, unaided and with only the occasional wobble.

However, the most remarkable improvement Eloise has made recently is her improved language, her increasing smile and her bubbly character occasionally returning.  Life has been pretty chaotic since January and all the hospital appointments, surgeries and treatments often mask the fact that Eloise is a developing and maturing toddler. Eloise is a tough little warrior and has coped with all the treatments with very, very little compliant but has also (understandably) lost some of her zest, bounce and smile in the process. Seeing her smile again, chat a lot more with us and Anna and relax because she is ‘home’ has been hugely encouraging.

On Monday lunch, Eloise got admitted into the Royal Marsden in preparation to have her stem cells collected on Tuesday. Eloise had her operation to insert the line and they collected cells on Tuesday, but unfortunately not enough stem cells were collected and Eloise had to repeat the collection again all day on Wednesday. She was brilliant on both days, sitting still all day, and we are now in a good position to start high dose chemotherapy next week.

Eloise then had an ECHO and ECG tests on Friday to assess her heart (which is in good order) before we met with her Oncologist to discuss the next steps for High Dose Chemo. Eloise will be starting high dose chemotherapy with stem cell rescue later this week (most likely Thursday) – this usually means being an inpatient for 6 weeks but can be much longer (or ideally slightly shorter if her blood counts recover unusually quickly….we would like this!).

The plan is then for Eloise to start focal radiotherapy for 6 weeks, immediately afterwards. No decision has been made on Eloise’s Proton Beam Therapy application but her chemotherapy protocol has been designed around the assumption it will be successful and that Eloise can be transferred as soon as she is well enough to go to Manchester. We are grateful for all the efforts of the team in pushing forward on fast treatment and designing the chemotherapy protocol around Eloise and her situation.

Eloise will have an MRI (under general anaesthetic) and Ophthalmology (eye) appointment on Monday at St George’s, followed by an Audiology appointment on Wednesday before being admitted. So, another full week again.

For those that pray;

• Please pray for no evidence of tumour re-growth on Monday’s MRI scan – whether or not it has grown is crucial for Eloise’s prognosis (even if her treatment would remain the same)
• Eloise’s Proton Beam Therapy application being successful
• For protection over Eloise as she starts High Dose Chemo (HDC) with stem-cell rescue (also known as Autologous Stem Cell Transplantation). We would greatly value prayers for two main risks:
  • Septicemia
  • VOD: Veno-occlusive disease – a serious complication starting with the liver

Thank you for all your continued love, support and prayers.

This weekend Eloise really turned a corner – she’s walking and acting much more like a normal 21 month old! She’s smiling a bit more which is lovely too and has really enjoyed being with her big sister Anna and seeing a few family members in the garden.  We are so grateful for the sunshine and for community nurses visiting, meaning we could be at home over the weekend and did not need to step into a hospital!

We are unbelievably grateful to God that Eloise is walking again – thank you for praying!  Eloise has dodged so many of the possible side effects of surgery.  She’s weak, but getting stronger and considering she has had 3 surgeries in just over 2 weeks, she really is doing amazingly from everyone’s accounts.  Go Eloise! 

We are also really pleased to say that Eloise hasn’t had any of her previous type of seizures since surgery! We were hesitant to say this for a while, but it appears now that she’s not had any since surgery.  She might still be experiencing seizure activity and her anti-epilepsy meds might also be masking seizures – but when we step back it is amazing that she hasn’t had any of her previous type!  Quite a contrast to having between 10-30 a day!  Thank you Jesus.

Tomorrow Eloise will be admitted into the Marsden ahead of her stem cell collection on Tuesday.  Tuesday will involve a general anaesethic to insert the line for the stem cell collection.  Then Eloise will need to sit still for the day (which might be more tricky now that she’s suddenly back walking!) whilst her stem cells are collected.  If they don’t collect enough, Eloise will have more collected on Wednesday.

How do we feel?

• We feel utterly grateful that Eloise seems to have fallen on the ‘right side’ of statistics over the past few weeks – she’s dodged some pretty awful things with high chances, and is really doing amazingly well.  We feel that prayers are really making a difference. Thank you to all those that pray. We can’t thank you enough.

• We have two current over-riding concerns 1) Relapse and 2)  The side effects of high-dose chemo with stem cell rescue.

Relapse:  Eloise’s ETMR is very aggressive and despite treatment, she still has very small percentages of survival (figures between 10-20% survival rate are given).  Relapse is very likely, and we need the cancer to stay away particularly in this phase whilst waiting for high-dose chemo to start, and focal radiotherapy in due course (and afterwards of course…!).

Side effects of high-dose chemo with stem cell rescue:  Unfortunately this treatment comes with serious risks – including a high mortality risk (we will save you all the details of this here…), high chance of hearing loss and increased risks of serious infection. But we don’t have an option if Eloise is to still have a chance of beating this cancer.

For those the pray:

• Thanks for an enjoyable, sunny Easter weekend as a family
• Huge thanks for eradication/control of Eloise’s previous seizures and for Eloise’s continued recovery – including walking unaided.
• Protection against relapse and recurrence of the cancer and tumour
• Successful (and uneventful) extraction of stem cells on Tuesday
• Wisdom as a team of expert Oncologists discuss and agree the bespoke combination of chemotherapy drugs to give Eloise (which we will then need to sign off)
• Favour with Eloise’s proton beam treatment application

Also today, a talented friend released this song – we found it particularly appropriate for Eloise Zoe’s situation (and name) and Easter, so thought we would share it.

(Eloise riding her unicorn pen earlier today)

Thank you for your prayers for the drive back to Guildford, which we managed on Sunday. Eloise did really well all things considered and we only needed to do short extra stops to reassure her.

Anna returned to school yesterday and is so pleased to be back seeing her friends – she has skipped into school both mornings. We are so grateful for her school, the fantastic teachers, and the wider school community for all their love and support. They have all been wonderful.

Today Eloise had more appointments and tests at the Royal Marsden. We signed off on her stem cell collection, High dose chemo and stem cell transplant (of her own stem cells). She had various blood tests, Covid tests etc. All part of the ‘normal’ that Eloise has to live with.

Eloise is enjoying being home. It’s sad as she’s not smiling as much as she used to, and is still quite weak – but she’s eating well (alongside a top up via her NG tube), gaining strength and is trying to occasionally take a couple of steps on her own (she stands and walks by holding onto our hand). The best medicine and incentive is playing with her sister – but equally you can see she is sad and confused that she can’t do what she used to. We keep telling her that she will be able to do it again – that she just needs to keep practicing, and that she’s a superstar!

Eloise has a small operation at St George’s tomorrow. She will then have Thursday at home (yay!), and then go into the Royal Surrey hospital on Friday for her to have her first higher dose of GCSF ahead of her stem cell collection next week.

How do we feel?
We’ve not really written much about this over the past few weeks…. it’s been a huge rollercoaster and for most of it, we are just in survival mode. We just keep going – working out logistics with always changing appointments and plans, caring for Eloise, trying to spend time with Anna when we can… and cherishing any moments we have.
We are feeling grateful for the successful tumour removal surgery and shunt surgery, and are enjoying all being under the same roof for a few nights. The sunshine has been brilliantly timed for us.

For those that pray:

• For Eloise to get stronger and be able to walk ‘properly’ before starting high-dose chemo which will wipe her out…for her to be comfortable, and have lots of joy and laughter over the next few days!
• For the operation tomorrow to go smoothly, with limited pain afterwards.
• For Eloise’s application for proton therapy to be accepted.

Eloise was discharged from Alder Hey yesterday evening.

After 12 days, Eloise has left hospital with no tumour and increasingly, no evidence of any long term neurological damage (hopefully) – thank you Liverpool and the wonderful staff at Alder Hey hospital. Mission accomplished for this part of the journey. We can’t thank you enough.

We are taking today slowly in our Air BnB in Liverpool to allow Eloise time to rest before the long car journey back home. Eloise is still quite weak (she can’t hold her weight/walk) and will need time to regain some of her previous mobility and strength but is making great progress, ably encouraged by playing with Anna. We will drive back to Guildford tomorrow, in time for Eloise to start the next stage of her treatment in the Royal Marsden and St Georges next week.

For those that pray:

• Please pray for protection against relapse (i.e. the cancer returning) in the days before Eloise starts chemotherapy. (ETMRs are a very aggresive form of cancer).
• Please pray for a smooth an uneventful journey back to Guildford.
• Please pray for an continued increase in Eloise’s strength (and weight) as she recovers. Specifically that she would regain her ability to walk so that she can simply enjoy being a mobile, unconnected 21-month old at home for a few days before re-admission for further treatment.

Eloise had her shunt surgery yesterday – the operation went smoothly. We are really grateful to all the staff here at Alder Hey for everything they have done to get Eloise through 2 operations and ensure she is looked after.

Since then, Eloise has turned a corner. She’s been sitting up for longer periods and has been eating well. We continue to give her a top up feed through her NG tube as she’s lost quite a bit of weight this past week and needs all the energy she can find to face the next step, but she’s doing much better. She continues to be quite weak and struggles to stand (let alone walk), but this appears to just be a strength/weakness issue rather than any neurological issue. It’s naturally sad to see Eloise like this (she walked at 10 months!), but we are grateful it’s only a strength issue.

All in all, we are unbelievably grateful that Eloise has had a Gross Total Resection (i.e. they removed all the tumour during surgery and there is no evidence of the tumour on her scans!) and she doesn’t appear to have obvious neurological side effects from the surgery.  We were told months ago (when the tumour was a lot, lot smaller ~8cm³ rather than ~30cm³) that Neurosurgeons were only likely to get some of the tumour out. So taking a step back, the fact that the neurosurgical team at Alder Hey managed to remove all of the tumour without Eloise having many of the possible (and/or expected) side effects, really is the most amazing answer to prayer. Wow.

Assuming Eloise continues to get stronger, we are hoping to be allowed home at some point over the next few days. It will be a long car journey, and with Eloise currently struggling to sit up for long periods (due to the pressure change in her head) this feels slightly daunting at the moment. Please pray she gets stronger, can sit for long periods and we feel comfortable driving her all the way back to Guildford. We would love for Eloise to be allowed out of hospital, to be able to see Anna and to get home for a few days before the next stage.

Next steps: the plan for the next stage of Eloise’s treatment seems to be coming together.

Eloise is being put forward for proton beam therapy – there is a UK panel that decide whether to approve her application, as it is very specialised and there is limited capacity to offer it to patients. We will write another blog in due course on how landmark this is (and overall Eloise’s treatment)…

Eloise will also have high dose chemo with stem cell rescue. The first stage of this is for Eloise to have her stem cells collected/harvested on Tuesday 6^th April, so she will be an inpatient in the Royal Marsden from Monday 5^th April. Eloise is then likely to be an inpatient for several weeks (with possible periods of isolation) whilst having high dose chemo and then stem cell transplant/rescue at the end.

In the meantime (between whenever we leave Alder Hey and go into the Marsden on Monday 5^th) we will also have a few more appointments in the Marsden in preparation. Eloise is also likely to have another small operation by general anaesthetic at St George’s next week ahead of the stem cell collection and high dose chemo (hopefully this will be just in one day, and is assuming Eloise is strong enough for another operation).

Many people have asked, why does Eloise need high dose chemotherapy and proton beam therapy when they removed all of the tumour?

In short, this is because Eloise’s cancerous tumour is so aggressive/malignant (WHO Grade IV) that even if a few (microscopic) cancer cells were left in her brain (which even after a Gross Total Resection will be the case), then the cells will multiply fast, grow into another tumour and spread to other parts of the central nervous system! Generally, the handful of survivors of ETMRs are those that have had a Gross Total Resection (GTR), High Dose Chemotherapy and Focal Radiotherapy (generally Proton Beam Therapy).  Whilst Eloise’s prognosis remains awful (i.e. single digit survival rates) due to her having an ETMR (the 3 factors noted above don’t equate to cure, just increase her odds), we are grateful that Eloise has managed to have a GTR and it looks like she is getting the best treatment possible. It’s absolutely amazing!

For those that pray:

• Prayer of thanks for the amazing miracle of a Gross Total Resection. This has been independently verified by radiographers – just utterly amazing. Prayer of thanks for a successful shunt operation which has helped to deal with the hydrocephalus and enabled Eloise to improve.
• Pray for Eloise to get stronger so she can manage the long car journey, can begin to stand/walk again – and face all that’s ahead.
• Pray for favour on Eloise’s application for Proton Beam Therapy – that this would be accepted and accepted quickly.
• Pray for wisdom for our oncologist and all those involved in looking at Eloise’s case – for them as they piece together the exact type of chemo and the timing in the context of proton etc.
• Pray for Anna too – she’s had several months of upheaval and not seeing us together. Pray for continued resilience and strength for her. She’s an absolute superstar.

The last few days have been unhelpfully eventful. Eloise had her external drain removed yesterday and ended the day doing much better. However, today she has unfortunately got a lot more poorly. She was sick several times and as a result had another CT scan. The scan was inconclusive so they tapped the Rickham reservoir in her head to test the pressure in her brain. The test concluded that Eloise has high cranial pressure (communicating hydrocephalus) and as a result will require an operation tomorrow to insert a shunt.

This is a much (much) more minor operation than the tumour surgery a week ago, but is still surgery under general anaesthetic and will increase the time it takes her to recover.

A team of oncologist and radiologists are still finalising the next steps (and timings) in her treatment plan, which is highly likely to involve chemotherapy (probably high dose with stem cell rescue) and proton beam therapy.

For those that pray:

• Please pray that the shunt operation goes smoothly, successfully and with no side effects.
• Pray that Eloise feels well enough to sit up , start eating and regain her strength. (Ideally we would like her to be walking again before we leave Alder Hey). Eloise needs to recover quickly so she can start the next stage of her treatment as soon as possible. (To reduce the chance of the tumour regrowing).
• Pray for a swift finalisation of Eloise’s treatment plan/next steps and for favour with applying for proton beam therapy.
• A huge on-going thanks to our Mums who have home-schooled, entertained and parented Anna in a very chaotic period.
• Also a massive thanks to all the people who have generously provided meals, gifts, cards and sent messages over the last few weeks – some of which are from people we don’t even know. We have been utterly blessed.

Eloise is on the neuro-recovery ward, but has had a harder couple of days and has been a bit more poorly and quite weak. As a result the doctors decided to do a CT scan to check how her brain was settling post-op. The CT scan showed that Eloise continues to have air on the brain and also has communicating hydrocephalus from surgery (a common side effect). In essence the CSF fluid in her brain cannot drain quick enough and creates pressure in Eloise’s brain. They have therefore put an external drain into her head to drain the build up of CSF.

Please pray this is just temporary for a few days and she doesn’t require a shunt (involving another operation and will require long term maintenance). At the moment it seems that she is relying on the external drain to normalise the pressure in her head. She’s very sleepy, at times uncomfortable and hasn’t managed to sit up much, so we’d be grateful if you could pray that this issue improves naturally so she can start to regain her strength.

Eloise is still in HDU but is planned to move to the recovery ward later today. Overall she is doing really well – she’s eaten some food (so shows she can swallow), is talking and her limbs can respond. Her eyes, on first appearance look ok and she can see things near and far away. From first appearances it doesn’t look like she has any obvious big long term side effects of surgery! Amazing!

She’s clearly in quite a bit of pain, but doesn’t really complain too much. She’s unfortunately been sick a few times and is very weak. But overall all the staff say she’s doing really well – when we think of the major surgery she has just had.

Our wonderful oncologist at the Marsden (Dr Sucheta Vaidya) and a whole team of experts across the world are working out next steps in terms of Eloise’s treatment. As ETMRs are so aggressive, Eloise will definitely need intense future treatment – the few ETMR survivors have generally had a Gross Total Resection (yay, Eloise has managed to have this!!), high dose chemo and focal radiotherapy/proton therapy…. and these 3 factors increase her chances of surviving. The MDT at the Marsden are today discussing Eloise’s case and we wait to hear next steps. We will update the blog in due course, once we have heard the agreed plan.

We continue to be exceptionally grateful for a successful surgery and the amazing experts working on Eloise’s case.

For those that pray:

• Pray for Eloise’s recovery from surgery. For her to stop being sick and to keep some calories down (via food and her NG tube). Pray she doesn’t develop hydrocephalus again (a risk from her surgery, which if it does, will occur over next few days). Pray against any seizures.
• Pray for the all the experts making decisions about next steps. Please pray that they are unanimous about the best approach and that Eloise can get the right treatment.
• For us all. All the options will require several months of hospital stays/admissions and Eloise will most likely be very poorly for a long while. The journey ahead is very long and we need renewed strength to keep going every day, and for Anna to be resilient despite always having one/both of us and Eloise in hospital.

As part of our journey we have met/connected with a number of hugely helpful, inspirational and caring families- many of whom are also going through their own challenges and tough journeys of having a child with cancer. We are indebted to many of them for giving us seasoned advice, connecting us with experts and for their support.

One family particularly close to our hearts are the Johnson family in Utah. Their daughter, Savannah, is a few weeks younger than Eloise and has also been diagnosed with an ETMR in a similar location and at the same time. You can follow Savannah’s story and progress on their blog. Please join us in also praying for Savannah and her family as our daughters bravely fight together.

We have just seen Mr Mallucci (Neurosurgeon). They’ve reviewed the galadium MRI scans which we didn’t have when we spoke last night… AND…. there is no evidence of the tumour and they are calling it a COMPLETE RESECTION. They think the area they saw on the previous scans before is blood and the veins.

As you can imagine we are utterly relieved and so unbelievably grateful. A total rollercoaster of emotion. But thank you Jesus!

Eloise will still require chemo and/or focal radiotherapy but all the medical professionals are all really really pleased.

Eloise has been sleeping this morning and various cannulas and lines are being taken off her. She is still in PICU and will be transferred to the HDU later to continue her recovery – it will be interesting to see how her eye movement and swallow are when she properly wakes up.

Also, as of now, Eloise has had no seizures today…

Thank you everyone for your love and prayers. Thank you to Mr Mallucci and his team. And thank you God!

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.