The last couple of days have been like a yo-yo.

Yesterday morning (Tuesday) Eloise seemed to suddenly jump back – she had taken her first steps, was walking round and wanting to play for a couple of hours. She had managed to nibble at a few things and her sickness had stopped. Eloise’s counts had bottomed out – her white cells and neutrophils are at zero. Everyone was amazed to see how she was doing after being in intensive care and in light of her treatment.

Today has been harder. Eloise temperature spiked and therefore had 2 antibiotics given immediately intravenously. She has been weak and was also very, very sick too.

Eloise continues on an unbelievable number of medications for various things. She has a daily GCSF injection (to boost her counts), and most days is having a blood/platelet transfusion. She’s on fluids, intravenous feeding and NG feeding.

Cancer treatment (particularly high-dose chemotherapy with stem cell autologous rescue) is such brutal treatment and it feels so cruel for little children to go through this… for months and months on end. Eloise’s treatment is on the extreme end of intense treatments – but still, it is awful for any child to have to go through this.

For those that pray:

• Pray the antibiotics are effective. We really really don’t want Eloise to get a serious infection/sepsis and desperately want to avoid another PICU admission.
• Pray for the sickness to end and for Eloise to feel better again.
• Pray for Eloise’s counts to come up – unexpectedly fast! She needs her counts to bounce up to be able to fight and get her strength up. And we need her to be strong to get to Manchester ASAP (hopefully in 10days – 2 weeks) for proton planning.
• Pray for Anna. Anna has found the last stretch particularly challenging. She’s missing Eloise and us both so much. She just wants to see Eloise and for us to all be at home for a day together… something so simple but impossible at the moment, and impossible for quite a while longer.  This all feels so unfair on her too.
• Please desperately pray this treatment does what it needs to do – that any cancer is completely OBLITERATED and NEVER RETURNS. We find it so horrendously hard to know that despite complete surgery, high dose chemotherapy and proton therapy (all of which we are grateful that Eloise is receiving) the vast, vast majority of ETMR children relapse and don’t make it through 1-2 years. It just seems so unfair on them all…

After an eventful week, Eloise has now been discharged from St George’s PICU and has been transferred back to the Royal Marsden for further recovery from her high dose chemotherapy.

Thank you to everyone for your prayers, love and messages. We are genuinely humbled and immensely grateful for all the love and support, including all the wonderful staff at both hospitals.

Following the high dose chemotherapy and her stem cell transplant on Thursday (the last blog update) Eloise has had a bumpy few days.

The stem cell transplant went very smoothly and Eloise initially was doing well. However, she then started to be consistently sick, which prevented her from receiving any food via her NG tube.

After quite a few discussions it was decided that Eloise should have an NJ tube (tube from her nose to her intestine) fitted before being discharged to the Marsden.

NJ tubes are not straightforward to fit and involve a little bit of guess work and then a (portable) x-ray to see if they are fitted properly. Unfortunately for Eloise this process took a few days and 6 attempts to get right, which slightly delayed Eloise’s return to the Marsden.

Eloise was transferred back to the Marsden this afternoon and she immediately picked up when she returned back to ‘her’ room. Unexpectedly and encouragingly she managed to eat some food normally this afternoon, which was wonderful to see.

Eloise will continue to stay at the Marsden as we wait for her blood counts to first go down further, and then recover, before we go to Manchester for the proton beam therapy. We are told to expect her to be particularly poorly for the next 1-2 weeks as the side effects of the high dose chemotherapy kick in.

How do we feel?
There is so much we could say here. It’s been one of the most intense weeks of the journey so far. So many very scary/worrying moments that we’ve had to just ‘ride’. We are very grateful that we have a God that is right there with us in all of these moments and is continuously with Eloise.

We feel pretty knackered (all three of us) but very grateful. We are very grateful for all the amazing staff across the NHS working so hard to investigate possible causes of the seizure (it was likely it was the chemo), administer her stem cell collection in a different hospital than planned and grateful that the seizure doesn’t appear to have any lasting impact on Eloise.

It has been a fairly intense week and we are very glad to be back at the Marsden and have put all our efforts into making sure Eloise recovers well and as soon as she can.

Special thanks to both our Mum’s who stepped in again to look after Anna and allowed both of us to be with Eloise in intensive care.

For those that pray:

• Prayers of thanks that Eloise is no longer requiring acute care and has come out the other side of a severe seizure with no obvious negative side effects.
• Prayers that Eloise would stop being sick, retain her feed and start to regain her strength and weight (Eloise didn’t eat/have feed for a week until last night).
• Prayers for energy for us.
• Prayers for some quality time with Anna this week, who has also had an unsettling week.

Eloise is still in intensive care but is much more responsive. She’s awake and talking, and watching some of her favourite programmes. She is very weak, and hasn’t yet had a feed, but we feel she has turned a corner. She was taken off the additional oxygen support and is stable.

The stem cell transplant went well. The team from the Marsden came and Eloise’s stem cells were transported in a cubicle (see below) into intensive care. The nurses then took out the cells, warmed them up in a specific water machine to un-freeze them and then gave them to Eloise via her Hickman line. All of this was meticulously timed and managed. She’s had no side effects thus far, which is fantastic.

Eloise has stopped being sick (including blood) since the middle of the night (after upping her anti-sickness meds further), and is due to re-start a very small feed via her NG line shortly. We are hoping she tolerates this and it can be increased and she can recover her strength, and that in due course she can also eat normally too!

We are hoping to get out of intensive care and return to the Marsden hospital over the weekend. Doctors feel relatively confident that the severe seizure was a response to the thiotepa chemo drug, so we really pray this is the case. We will be talking to neurologists in due course, so we know what to do if this were to ever happen again (we really pray it doesn’t).

How do we feel?
We are so proud of our girl. It’s been a brutal week, and we know Eloise is also likely to feel very poorly from the chemo over the next 1-2 weeks, but we are so proud that she has been soldiering on. It’s lovely being able to talk to her again. She’s such a sweetie!

We are incredibly grateful to all the staff in intensive care here at St George’s and the teams at Royal Marsden. They have been wonderful and Eloise has had so many things checked and re-checked (MRIs, EEGs, ECGs, bloods, cultures etc etc). We couldn’t ask for anything more!

We are very grateful that Eloise has not had any obvious seizure activity over the past few days. So incredibly relieved and grateful.

We also feel exhausted, miss Anna and miss normality. But we are grateful that Eloise has got through this week and we keep our minds focused on moving forward…

For those that pray:

• Thanks that Eloise has come through a scary ordeal, is now doing much better than she was and can now focus on recovery (from the seizure and her high dose chemo).
• Pray that Eloise continues to get stronger and tolerates her feeds.
• Pray for Anna, as this has been a particularly hard week for her too.
• Pray for Eloise as she suffers the effects of the high-dose chemotherapy over the next 1-2 weeks. Pray these short term effects are as minimal as possible (e.g. limited mucositis, sickness, skin damage) and that she can get to proton therapy very very quickly!
• Pray that the high-dose chemo is doing what it needs to do, and kills any remaining cancer cells.

Update from intensive care – stem cell transplant today at noon.

Eloise continues in intensive care. Her EEG came back with no active seizure activity which is great. She was a little more responsive, beginning last night.

Unfortunately she has started vomiting a lot, including blood. The working theory is that the stomach is just aggravated from the chemo and all the other things Eloise has had thrown at her in recent days and weeks.

The stem cell transplant is ‘All systems go!’. The team from the Royal Marsden hospital have come across to St George’s and Eloise’s stem cells are being transported to St George’s as we speak.

For those that pray:

• Please pray for the transplant (at noon today). For none of the risks from the procedure to be a problem.
• Pray Eloise’s body accepts the cells well and they enable her to get stronger. Unfortunately we expect her to keep getting worse from the chemo over the next week/2 weeks before getting better.
• Please pray for Eloise to stop being sick.
• Please pray for her strength to recover and for the chemo to have done what it needed to do – obliterate any remaining cancer cells.
• Praise for the amazing staff here at St George’s and the Royal Marsden, for their care, for making a plan to do the transplant in intensive care and St George’s and for leaving no stone unturned.

Please pray.

Last night after the MRI, which came back with no change (which is good news) Eloise was taken off the sedation and ventilator. All the other tests came back clear, indicating that the seizure was either caused be 1) her now starting to have these types of seizure or 2) a response to the high dose thiotepa drug. Unfortunately only time will tell…

Eloise is still in PICU and is unfortunately not responding as much as the Doctors would hope. She has spoken a few words and has moved her limbs when asked (if she’s awake) but is very sleepy, not opening her eyes much and is requiring some support with her oxygen/CO2 levels. She also has some jerky movements.

She did not have her final dose of thiotepa and will therefore now have her stem cell transplant tomorrow. Eloise will also have an EEG today to look at her brain activity after the seizure.

Please, please pray for her. It’s distressing to see her not responding. Please pray she wakes up properly, is able to talk, stops jerky movements and returns to being the Eloise we know and love! She needs all the strength she can muster with the stem cell transplant and all her counts dropping from the chemo. Come on, keep fighting Eloise!

Please pray that this severe seizure (with lack of breathing) was an absolute one off and a response to the thiotepa. As you can imagine, we can’t even think about this ever happening again…. Please pray for the EEG – that it shows nothing concerning.

Thank you all for your love and prayers for our darling warrior. She has been through so much. We need her to keep living up to the meaning of her name Eloise Zoe!

Eloise is now in St George’s Paediatric Intensive Care Unit (PICU) and is sedated and on a ventilator. She’s in an isolated room due to being on high dose chemo and therefore having a higher infection risk.

Unfortunately Eloise ran a temperature during the night so the Drs need to do lots of checks for infection, as well trying to work out why she had the seizure. As part of these checks she will also have another MRI scan later.

Please pray for wisdom to get to bottom of the seizure and for her to breathe sufficiently when they take her off the ventilator – she wasn’t managing this earlier.

She’s not had her final chemo drug and we think she probably won’t…. It could be the cause of the seizure and/or she needs to be stronger for it. She will still need her stem cell transplant on Friday.

Obviously we have a lot of questions regarding her having this type of seizure again sometime – the lack of breathing for a very prolonged period of time being the main issue.. But those are questions for another day.

Today we are praying she breathes by herself, comes around and is ok, the MRI shows no issues and we get to the bottom of her seizure and control her temperature/any infection.

Eloise unfortunately, had a very long and severe seizure this evening, out of the blue. The most worrying thing was her lack of breathing.
The team at the Royal Marsden have been brilliant and have sedated and ventilated her. She had a CT scan which is fine and shows no changes. She is currently being transferred via a PICU ambulance to St George’s to go onto Paediatric Intensive Care.

Please pray for the Doctors as they ascertain the cause of the seizure, work out when and how to take her off the ventilator, and for her to not seize and breathe again when this happens (this apparently won’t be for a while – anything from tomorrow morning to a few days). Please pray for wisdom.

Eloise is due her final dose of the high dose chemo in the morning – pray for wisdom as whether or not to give this (and if so, when) and also for her stem cell transplant on Friday which will still be needed as the chemo will have killed her bone marrow.

Please pray for Anna and the extended family too – that they too are peaceful.

Eloise has had a worrying seizure at tea time today and is currently being transferred to pediatric intensive care at St George’s. (There is no PICU at the Royal Marsden). She is currently in a stable condition under sedation. Please be praying that medical staff would know the best course of action and that she can recover quickly. Please also pray for peace for Pete and Mel.

So Eloise has had 3 days of high dose chemotherapy, and she is doing very, very well. She is walking around, (attached to stickman), has, so far, avoided being sick and has settled back into full-time hospital life.  She has been getting to know many of the nurses and Doctor’s names and it is lovely to see her walking so well and her cheeky self returning.  Physios, speech therapists, dieticians and nurses are all really impressed with how Eloise is doing – especially when she has gone through so, so much in such a short space of time!  Go Eloise!

Yesterday we had an update from our oncologist regarding Eloise’s MRI results from Monday – following the MDT at the Marsden yesterday morning.  The MDT have concluded that the marks on the scans are ‘reactive changes from surgery’ and have deferred to the neurosurgical team.  This means the marks are likely to be blood and other post-operative scarring/changes, as described at the time by the Neurosurgeon.  That said, as we know – Eloise is likely to have cancer cells still flying around in her tumour bed, and hence the high-dose chemotherapy and proton beam therapy is critically needed to try and kill any remaining cancer cells.

Thank you for praying.  Please keep praying – we are feeling that prayers are being answered!  Eloise has become less agitated and is much happier, she is doing well on the chemo so far (but it is very early days) and the MRI results are much more encouraging (no growth or spread!).

Tomorrow morning Eloise starts her next chemo drug, which is very toxic and is also excreted through the skin.  We have a full-on nappy changing (hourly), bathing and changing clothes regime (e.g. 4- 8 times a day, with all the tubes connected etc), round the clock, in order to try to keep the chemo drug off her skin and prevent damage to the skin.  This is going to be an exhausting few days for all of us.  This regime is until Eloise has her autologous stem cell transplant on Friday.

For those that pray:

•             Praise that the MRI results show no growth

•             Praise that Eloise is doing exceptionally well – she is so strong, still having no seizures and is doing amazingly.

•             Pray that the next few days of bathing, clothes and bedding changing and nappy changing are ok – that Eloise isn’t too frustrated by it, and that we all have the energy to get through 24/7.  Pray that she continues to cope with chemotherapy well and continues to not be sick (i.e. vomit).

•             Continued prayers for Eloise to be able to start proton beam therapy very very quickly.

Eloise and Pete (and stickman) enjoying the ward garden at the Marsden, whilst we can!

It’s been another busy/full week for Eloise. In chronological order:

On Monday Eloise had her ophthalmology appt and then her MRI scan. Her eyes are all looking good so far, which is fantastic. Eloise did really well in going nil by mouth until 3pm and had her MRI at St George’s. They also slightly adjusted her shunt afterwards, so it was another long day in hospital.

Tuesday we had a community nurse visit but apart from that enjoyed the day at home! What a treat! We also heard that Eloise has been accepted for Proton Beam Therapy! We are so relieved about this and are very grateful that she will be given this opportunity for this treatment. Eloise will have this treatment as soon as she is able, following the high dose chemo and stem cell rescue.

On Wednesday (yesterday), Eloise had an audiology appointment (all good with her hearing so far!) and was then admitted into the Royal Marsden to start high dose chemotherapy.

We also heard the results of her MRI… The MRI shows no new growth but there are still some question marks regarding the mass around her veins in the middle of her brain – whether it is post-operative scarring or some small residual tumour.  We had mixed responses to this news – we hadn’t realised that there were some queries about this area still (the surgery had been classified as a Gross Total Resection and we had been told the small area left was bleeding/scarring etc.) and we didn’t realise that it’s often hard to tell these things, especially when it’s such a small area (mm’s). We are naturally relieved that it’s not spread or grown – a massive relief (if it had, we might have needed to quickly change treatment plan) but have a few concerns about this possible residue. The oncologist is seeking the neurosurgeons and others points of view. Either way, high dose chemo with stem cell rescue and proton beam therapy are the best next course of action – and the scan confirmed that we are ok to go ahead with these. It really is an emotional rollercoaster.

Eloise started her high dose chemotherapy this morning. She will have 6 days of chemo (3 days of high dose of one drug and then 3 days of high dose of the next drug), followed by 2 rest days – then a stem cell transplant at 4pm next Friday.  The next few days are mapped out hour by hour…

How do we feel?

Flat to be honest. It’s an emotional rollercoaster that we have been on for months and some days are harder than others. We are very very grateful for Eloise being accepted for Proton Beam Therapy, but know there are so many battles to keep fighting. We are very flat about possible residual tumour but also know that we might never get a definitive answer to what the marks on the images are… they simply don’t know.

For those that pray:

• Praise that the scans remain stable – that it hasn’t spread or re-grown! Pray we get clarity on the scans and that any cancer cells disappear (even if not in a tumour residue there will still be some cells).
• For Eloise to tolerate the chemotherapy remarkably well (please see previous blog about risks). For the next few days, please particularly pray against sickness which she is likely to have now.
• For Eloise to be able to start Proton Beam Therapy very very quickly. We need logistical challenges to be overcome e.g. the likely need for her to have a proton planning session/MRI in Manchester asap – but for Eloise to be well enough to do this. Quick Proton Beam Therapy is crucial for her treatment and prognosis, so please please pray that miraculously she is well enough from chemo to do any proton planning sessions and to start Proton Beam Therapy very quickly.  Pray the logistics would all come together and that admin wouldn’t delay things.
• For Anna. Anna noticed that we were packing for a longer stint in hospital and is now much more aware of the reality of this accute treatment – the length of hospital stays, being separated for weeks, how it can make Eloise poorly etc. Please pray for her little smart mind as she processes all of this.
• For Eloise to be more peaceful. Last night Eloise seemed quite agitated. She seems to know that she’s back in hospital for a while and she too isn’t particularly happy about it. She’s been smiling, chatting and playing with the nurses again today but please pray this continues and she’s more peaceful again – particularly at night. It can be quite distressing seeing her agitated as she also wants to pull her Hickman and NG lines out, so please pray for calm and peace