Today we met with the oncologist to discuss Eloise’s biopsy and to discuss the next steps in terms of chemotherapy.

It was a long meeting, with lots of information (which we won’t go into the detail here – as there is just so much). But here are a few of the key points:

1. The biopsy is still being analysed by pathologists at Great Ormond Street to diagnose what the exact sub-type of Embryonal tumour it is.  But all embryonal tumours do not have a good prognosis – particularly in very small children. If Eloise is to get to the age of going to school then she is going to have to fight and beat the odds significantly. The chemotherapy approach at this stage won’t be affected by the sub-type, but the pathology might just give some useful information for further down the line.
2. Eloise will be on a very high dose chemotherapy – involving 6 x 21-28 day cycles.  It will involve 5 chemo drugs, given via a Hickman line (tubes in the chest) for 7 days.  Eloise will then have some ‘rest days’, but even on the rest days there will be various appointments.  At the end of the 6 rounds she will have a stem cell rescue procedure too. Eloise will be an inpatient for the entire first cycle and the first part of the second cycle. She will then return as an inpatient for the 7 chemo days each future cycle as a minimum.
3. The list of short and long term side effects of high-dose chemotherapy treatment for children is very long and as you can probably imagine – not pleasant.  But in short, the growth of the tumour and the prognosis means we don’t have an option but to start treatment in the hope that it will shrink the tumour (ideally obliterate it) and give us options for further treatment (e.g. surgery and/or targeted radiotherapy) once the tumour is smaller.  

Next steps:

• Next week (Wednesday 17^th) Eloise will have her Hickman Line inserted via a small operation (day patient) at St George’s Hospital.  They will also do a lumber puncture at the same time, whilst she is under general anaesthetic.  We will all need Covid tests ahead of this.
• On Friday (19^th), Eloise will have various appointments to look at her kidneys and hearing in preparation for chemo, followed by another meeting with the oncologist. 
• Eloise will then start her first round of chemo on 22^nd February.  She will then be in the Royal Marsden as an inpatient for the next 5-6 weeks.

How do we feel?

• Exhausted and crushed from another difficult conversation with another consultant telling us that Eloise’s prognosis is worse than it was at the start of the day and that Eloise’s diagnosis is exceptionally rare. We try to make the day special and enjoy being fully present for the girls, but find we are exhausted in the evening.
• Scared about the next few weeks – about how Eloise, Anna and ourselves will physically and mentally cope.  We are absolutely gutted the girls wont see each other for so many weeks – that literally breaks our hearts.  We will both be allowed into hospital (but only one of us stay each night), but it means as a family we will be separated for a long time, and then regularly be separated for the next few months.

Covid pandemic + Cancerous Brain Tumour in a toddler is exceptionally rough going.

• Despite the hard things, we feel grateful that we can both go into hospital whilst she is an inpatient and grateful that we feel the NHS would fire anything at this to try and beat it.

For those that pray:

• FOR THE TUMOUR TO BE OBLITERATED and for Eloise to be strong, healthy and full of life (refer to blog 1 for her name*)
• Pray we can make the most of the next few days.  Our last ‘family time’ for a very long time.
• Emotional and mental strength to keep being strong for our beautiful and smart girls.
• Practically – for none of us to get Covid and for the operation and appointments next week to be successful and for Eloise to be amazingly peaceful despite the chaos.

* We’ve since been told that Eloise also means ‘healthy’ too! So we are also praying this over her.

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This afternoon the Neurosurgeon phoned us to inform us that the preliminary results from Eloise’s biopsy have identified her tumour as a completely different tumour to what they had originally thought.

The new tumour (an Embryonal Tumour) is an aggressive, high grade tumour not usually found in the location that Eloise has her tumour, but is likely to spread to other areas of the Central Nervous System (CNS).  Further tests are needed to work out the exact sub-set of the tumour – but for now they are advising that Eloise has chemotherapy and not surgery (she is too young for radiotherapy).

We will meet with an Oncologist next week to discuss the full results and discuss chemo in more detail, with a view to starting chemo the week after.

This is clearly not the news we were wanting and is extremely distressing to hear.

How do we feel:

• Devastated.  Its pretty much the worst thing you can imagine for your little darling girl – let alone for Anna, and us all.

To be honest – that’s pretty much it.  We are desperately trying to put on a brave face for Anna and Eloise, but being honest, it really is awful….

For those that pray:

• For the tumour to be obliterated 😊
• For the tumour sub-set to be one that responds well to chemotherapy
• For strength to keep smiling and be joyful for the girls – and to enjoy the days, even if we are in lockdown as well!

Eloise was finally discharged last night (Tuesday evening) so slightly later than expected.  Anna and Eloise loved their reunion and its great to be back home all together after a very intense week  – and to enjoy good food and our beds. 

Eloise is recovering ok, but upset at times – exhaustion and the physical and emotional challenge of the past week have definitely affected her, but she’s so happy to see Anna, play with her toys and see her fish 😊.

How do we feel:

• Very happy to be home!  We left a week ago for the MRI, not expecting to stay in hospital, and only returned last night.
• Up and down – hopeful when we see Eloise slightly improving from the day before, but also sad/disappointed if she is struggling.

For those that pray:

• For the biopsy results on Friday – please pray the results show it is low-grade and is a tumour that responds well to treatment.
• For Eloise to get better – to get more steady on her feet again, and for her seizures to go (we’ve seen some positive signs that the new medication is helping, but it’s still very early days).
• For us to enjoy some precious days together before we start the next challenge of the next set of treatment (whatever that is).

Eloise has been recovering in the post surgery ward and has been doing well, including eating very well and charming the Drs and nurses.

She has has had a few post op ‘teething’ issues but in general is making steady progress and we hope she will be discharged later today.

We will be back early tomorrow to see a specialist paediatric neuro-ophthamologist (an eye specialist) – to check the pressure in her brain/tumour hasn’t damaged her eye sight.

Thank you to everyone for all your prayers, prayer rotas, messages of encouragement, food, gifts and love. We have, quite frankly, been humbled by the outpouring of love, generosity and prayers for Eloise and us. What is quite extraordinary to us is, due to the pandemic, many of you have never met Eloise (or even us!). We are so exceptionally grateful for you supporting us in this critical time. We truly are. As the blog title suggests we have felt surrounded by love, prayers and God’s presence (during the worst moments before Eloise went into ICU we were singing The Blessing over her – the neurologist turned to us and said “I like this song – it’s one of my favourites). Thank you and we thank God.

Going home and spending time as the four of us will be very precious. However, we also know this is only the start of Eloise’s journey and would greatly value your continued prayers.

For those that pray:

The immediate next steps are:

• Biopsy – Samples of Eloise tumour are being analysed and reviewed as we type. The results will be sent to the Neurosurgeon who will discuss Eloise at the larger MDT meeting. The result of the biopsy are crucial in determining both Eloise’s treatment and ultimately prognosis. Please pray that Eloise’s tumour is low grade and that there are some good (read, as low risk as possible) options available to us
• MDT meeting – a large collective of wonderfully skilled and clever neuro-oncology professionals are going to review Eloise’s case on Friday further to the biopsy results. The Neurosurgeon will then phone us later in the day and present their discussion and proposed/preferred next steps. Please pray that there is a clear and obvious treatment route – one that the MDT are confident and experienced in. We understand surgery, chemo and even proton therapy are all possible options.
• Eloise’s recovery – Please also pray that Eloise recovers well from the current ETV and biopsy surgery and can enjoy spending time and playing with Anna again. Specifically we would like Eloise to not tremble/tremor anymore and to gain control over the seizures (i.e. eliminate them with meds).

How are we feeling?

• We are grateful that Eloise is doing well. Grateful to have got through the weekend and through a pretty frightening period post surgery. Grateful for all the wonderful staff and care at St George’s.
• We feel surrounded by love and prayers – thank you ever so much.
• We feel tired but ok (Mel is looking forward to her own bed!)
• We feel grateful that Anna has been a star,  wonderfully mature and has not been too anxious or missed us too much.

Eloise was moved out of ICU late last night and is now in the post surgery recovery ward.

She (and we) slept fairly well last night (it’s all relative). She is doing well this morning and continuing to show encouraging signs of recovery including eating well and singing to her music!

Firstly, thank you to everyone who has prayed. We have desperately needed it and been sustained by it.

It has been a pretty traumatic and stressful 24 hours or so and it has often been very hard to update our family on what the latest situation is.

We are so grateful for people standing with us in prayer and spirit during this difficult time.

The ETV surgery was deemed a success and the fantastic neurosurgeon and his team managed to get some good size piece of the tumour to biopsy. For this we are truly grateful and pray that the ETV will start to relive some of the pressure in her brain as some of the spinal fluid starts to drain.

Following a short stint in the recovery room, Eloise was sent back to the paediatric surgery ward to recover. Unfortunately after a short while Eloise started having some really bad seizures that we couldn’t get under control.

Eloise was then taken to have a CT scan to assess her brain. The scan showed that during the surgery, air had got trapped into her brain (where there is normally fluid). This trapped air is irritating Eloises sore brain and the most likely cause for the more severe seizures.

As result, Eloise has been admitted into the paediatric intensive care unit and has been put on oxygen to expedite the absorbation of the air in her brain into the blood.

Thankfully this morning Eloise is improving bar a fever (which is now also coming down). The Neurosurgeons inform us that this is not uncommon for post neurosurgery but Eloise had further blood tests to check it isn’t an infection – which early signs show it is unlikely.

The anti-epiletic drugs also appear to have kicked in and Eloise has mercifully only had one small seizure this morning (including navigating a blood sample without having a seizure!).

Eloise will continue to be monitored in intensive care for the rest of the day (unless there is a sudden rush for beds) with a view to moving to the post-surgery recovery ward in due course, all being well.

Thank you so much for all your prayers, encouragement, picture, links to videos and messages. It truly has been a very frightening and traumatic 24 hours and we are exceptionally grateful to all of you. Thankfully it appears that Eloise is through the worst (for this round) and on a more steady path to full recovery.

Your continued prayers would be hugely appreciated. Specifically for:

• Gratitude for Eloise’s improved condition, for God’s presence with us in it all, for the care and excellence of all the staff at St George’s.
• That we would achieve some permanent level of seizure control for Eloise through the new medication
• That Eloise rests well and smoothly adjusts to her new ‘normal’ pressure in her brain – giving her greater stability and balance and for a full recovery from the surgery.
• For a positive result from the biopsy – that the tumour is low grade and that we would have some low risk options to start treating it.
• Gratitude that we both allowed into ICU. Please pray that they continue to allow 2 of us in / ability to swap for as long as possible.
• For Anna to be protected from the anxiety and stress and not feel abandoned as we left her quite abruptly.

Thank you so much for praying. There are the first signs of improvement in the last couple of hours but she is still critical and still much in need of prayer through today and tomorrow. Please continue to pray that she continues to improve. Thank you for praying and getting her this far.

Eloise is now in intensive care and very unwell. They think that air might have got in to her brain during the surgery. Please pray that they can stabilise her and that she will not suffer brain damage.

Despite a successful operation this afternoon., Eloise is not doing well at all. We are struggling to get her seizures under control.

Urgent prayers please.

After posting yesterday’s blog we have been told that Eloise will now have surgery on Friday morning (around 8.30) and not today (Thursday).

The procedure will also now involve a biopsy as well as an ETV – the whole procedure should take roughly an hour to an hour and half.

The reason for the biopsy is we have found out that Eloise’s tumour has aggressively grown (it has grown ~50% in size in two months) and we need to send off samples to review it pathologically to help determine the next steps.

This has come as a huge shock as the majority (80%) of tectal plate gliomas (the suspected type of tumour that Eloise has) are very slow growing. Confusingly, the MRI did not show some of the other signs (such as enhancement or diffusion) that the tumour is malignant. However, the large increase in the tumours size is cause for concern.

We can only take it one step at a time and will focus on making sure that the ETV surgery goes as smoothly as possible to reduce the hydrocephalus before discussing our options for the tumour.

For those that pray:

• Pray for healing – for the reduction and elimination of Eloise’s symptoms (seizures and trembling), tumour and pressure in the brain
• Please pray for peace, wisdom and protection over all our family – it has been an immensely tough and shocking day for all of us and we need to think clearly and calmly as we discuss and consent to pretty major brain surgery
• Pray that Eloise does not get too distressed in hospital with the continuous stream of tests, change in routine and broken sleep to be observed through the night
• Pray for energy – we are both feeling pretty drained but equally know this is just the start of a rough week and even longer treatment journey for Eloise
• Pray for Anna – that she won’t feel abandoned, lonely or less valued as a result of all that is going on