Prayers for Friday and beyond

It’s been a full few weeks but overall Eloise has been doing excellently. She’s really made some progress and has turned the corner recently… she has much much, more energy than she’s had for the past 2 years and her sassy character is coming out.

This also means we are dealing with a few more toddler tantrums – for example, she now regularly says to us ‘No, I’m playing’ (because she is). For the first time in years, she’s actually playing of her own volition rather than us doing anything we can to get her to play/do something! This is so encouraging and also interesting both for her and for us….

Eloise’s language is still quite behind but she’s making progress. It’s helpful having a lovely aunt who’s a speech and language therapist 😀. Eloise’s memory and sensory processing for certain things continues to be tricky but has been vastly improving as we wean off sodium valproate.

Eloise has been having a couple of physio sessions each week which has been excellent to build muscle strength. She’s walking further than she has done before which is also great for her independence and confidence too.

And Eloise has been loving her nursery mornings. She is very happy to give us a big hug and wave goodbye. Seeing her love going to nursery and taking it so seriously is such a delight – it’s truly part of her identity. It is clear she feels loved, cared for, and perhaps the closest she has to experiencing a ‘normal childhood’.

It’s also great that we’ve just been told that the Council has approved Eloise being pulled back/deferred a year, in the hope she can catch up a little more before starting school (so she will now start in Sept 2024 rather than Sept 2023). So she has 18 months more of nursery! Yay!

That said Eloise continues to have challenges.
In particular:

  • Her seizures have continued. They are short absences where Eloise isn’t conscious or responsive (they can be a few seconds or sometimes are up to a minute – the longer ones can actually feel quite a long time). They are quite inconsistent too – she might not have any (that we see) for a few days, then might have several in the same day/couple of days.
  • Her tremor is also continuing and is also quite inconsistent. Some days hardly there, others it’s pretty bad. It’s always a lot worse after waking up and for quite a while she is very wobbly! Poor girl.
  • A meeting we had with the ophthalmologist was positive but there are quite a few issues that we haven’t yet gotten to the bottom of and/or can do much about (in terms of the eye-brain connection).
  • We have yet to ascertain how her endocrinology is affected. Her growth has massively been stalled so she’s now very small for her age (she started off very tall!) but we will see if/how that improves over the coming months. There are several areas of the brain that have been targeted by proton/surgery that impact endocrinology – these impact growth, thyroid functioning etc etc. Fortunately, this is an area where there is a lot more that can be done to help.

Each appointment with specialists is odd – they are amazed and delighted that Eloise is defying the odds and doing so well and functioning as she is (she’s walking, talking, eating, chatting, making friends etc.) but at the same time we also have quite a few issues to iron out in almost all medical areas.

Despite all the challenges Eloise lives with every day, she loves life. She is happiest when she and Anna (and Kobe) are at home playing on their hobby horses, making dens, cooking (she loves helping with every single meal), doing crafts and doing various versions of make-believe play. The girls continue to adore each other.

On Friday, Eloise has another MRI under general anaesthetic (GA). This time her shunt is likely to be adjusted to a different pressure if the scan shows low pressure again. She will also have endocrinology bloods done while she is under. After her last GA, just before Christmas, Eloise had approximately 10 seizures the following day (which was odd/scary as she’s had over 65 GAs before and has never had this reaction before!). Please pray this doesn’t happen. We are more aware and hopefully prepared this time, if it does.

For those that pray:

  • Give thanks that Eloise is a walking miracle and that doctors and specialists are delighted with how she is doing. In Anna’s words “All the Doctors thought Eloise was going to die, but thousands of people prayed and Jesus saved her! We are so lucky she didn’t die”. (We’ve never directly told Anna this but recently she has started to put it all together in her own way and words).
  • Pray for Eloise’s MRI – pray that it shows that she is NED!!!
  • Pray that the shunt adjustment (ie adjusting the pressure/fluid in the brain) is ok and doesn’t cause any other issues.
  • Pray against any seizures after the GA.
  • Pray that the scarring and calcification haven’t worsened and have improved/reduced.
  • Pray that all the challenges that Eloise faces (listed above) are dealt with and that Eloise doesn’t always have to live with these hurdles. Pray that Eloise continues to come on in leaps and bounds – pray for full and complete healing.

Happy 2023!

The December in-and-out of hospital continued, with Eloise getting both a UTI and viral infection (at the same time) during the week running up to Christmas. But after another night in hospital, some IV antibiotics and some great care, we were home and had a lovely Christmas with Mel’s family (at Mel’s Mum’s house).

We had some very special moments and the girls loved all the Christmas magic and fun. We even had Mel’s Grandparents with us at Mel’s Mum’s for Christmas. Sadly Mel’s Grandpa passed away a couple of days after we left.

We’ve had some lovely family time but unfortunately yesterday/today Eloise has picked up another infection so we are back in hospital. Looks like it’s tonsillitis so we hope to be able to go home later with some oral antibiotics.

Next week Eloise has a range of appointments- an opthalmologist appt at St George’s, an endocrinology appt at The Royal Marsden and an epilepsy consultant at the Royal Surrey. Hopefully she will be fully recovered by then and also be able to return to nursery later next week.

How do we feel?

Grateful that Eloise has made it to 2023! We actually started to believe this Christmas that it might not be Eloise’s last and that we could look forward to future ones with her… that’s actually quite remarkable.

Grateful that the issues we are currently dealing with are ‘more normal childhood’ illnesses (even if it impacts Eloise more severely) and even if it requires more hospital trips.

Grateful for the kind hospital staff. We feel bad having to come in each time (we get told to come in as it’s the protocol) and each time hope to avoid it, but the staff are so kind nonetheless.

Weary – it was a lovely Christmas but it’s been flanked with illness. Anna is also asking lots of very pertinent questions about childhood cancer, death, and everything in between. Unusual but privileged conversations to be having with a 6-year-old.

For those that pray:

  • Give thanks that Eloise made it to 2023! Below is a picture of her on a rocking horse at Mel’s Mum’s house. She is finally strong enough to sit on it without someone holding her! Eloise is getting stronger! Praise God!
  • Give thanks that the last scan showed she was NED. Pray the next one (end of Jan) continues to show that too.
  • Pray for wisdom with all the upcoming appts.
  • Pray for Mel’s extended family as they grieve the loss of Great Grandpa. A lovely man who when he said goodbye to us on Tuesday, prayed a blessing over Anna and Eloise. What a heritage and we are so grateful to him and Mel’s Nanna

Little update

Eloise recovered symptomatically from Flu A last week and by the weekend was doing well again. Thank you to those of you who prayed. Eloise actually had the non-live flu vaccine (a jab) a couple of days before she was admitted to hospital with flu, so the jab might have just helped her get over it a bit quicker (even if it didn’t prevent her from getting it. We also know it wasn’t a positive test because of the jab – as it was non-live vaccine).

We were therefore really grateful Eloise was able to have her port removed at St George’s on Tuesday, as planned. Eloise has been surprisingly sore with the scarring from surgery (the surgeon said it was unusually tricky to remove the port), but Eloise is happy and active. Unfortunately for 24 hours post-surgery Eloise started having a lot of seizures (still short ones), but a sudden large increase. The working theory is that she had a response to the general anaesethic (GA) – which is slightly odd as she’s never had a reaction before (and she’s had between 65-70 GAs before and they have generally had the opposite impact, reducing seizures). But it just shows we can never take anything for granted. One for us to watch for future GA’s – the next being planned for her next MRI at end of January…Despite this, we were grateful Eloise recovered from the seizures and didn’t need rescue medication. She is back to her happy and very cheeky self! A true warrior and champion. 😊

We just had our last community nurse visit (unless her surgery scar doesn’t seal over the weekend, in which case we might get an extra final visit) which feels like quite a marker in the sand at the end of 2022. The Children’s Community Nurses have been fabulous over the past 2 years – caring for Eloise and us all and trying to visit at times that don’t interfere with Eloise’s/our life too much. In a very strange way, we will miss them – and are very grateful to them.

Eloise unfortunately missed her ‘Angels’ Nativity as it was at the same time as she had her port surgery, but Rydes Hill School were fantastic as ever and let me come and watch the dress rehearsal (Eloise wouldn’t have known the difference!). A really special memory and Eloise seemed to really enjoy it.

We are so grateful that we are able to celebrate this Christmas as a family. We will never take it for granted. Angel nativity shows that Eloise statistically should never have been in, Christmas parties, and being together and enjoying all the fun of Christmas – what a blessing.

For those that pray:

  • Give thanks that Eloise’s port was removed
  • Give thanks that Eloise recovered from the flu and is back to her well and happy self
  • Pray for seizure control – for continued wisdom on how best to treat going forward
  • Pray for protection from infection over the Christmas period.
  • Pray we don’t need any unplanned hospital trips and that Eloise (and Anna) can have an extra special Christmas this year – with lots of smiles, laughter, joy and peace

Infection yo-yo

We’ve been silent for the past few weeks but not because it’s been quiet – it’s been an extreme winter infection hospital admission yo-yo.

Eloise has had 4 admissions into our local hospital in the past 6 weeks or so with infections.

3 weeks ago Eloise had a few days/nights in hospital following another fever and poor observations (racing heart, heightened blood pressure and low O2). Tests showed she had 2 viruses (one being RSV – which is pretty nasty), plus a secondary bacterial infection in one of her lungs. As a result she was pretty poorly!

She had a few days of IV infusions and then had oral antibiotics back at home. Whilst in hospital she had a chest X-ray which coincidentally showed that her port had ‘moved down’ and should be removed sooner rather than later.

She recovered from this bout of illness and was then doing really well. The best she’d ever been for 2 years, which is really encouraging.

Eloise when she is going “well”

This ‘well’ period lasted about 1.5 weeks, during which Eloise enjoyed nursery and has also done a few sessions of intense physio to try and get her physically stronger. Unfortunately her short seizures have continued averaging about one per day, but are significantly worse when she’s poorly. We have had many discussions with consultants about how to deal with this and this is a continual work in progress, but for now nothing significantly will be changed in terms of medication etc. We still want to wean Eloise off sodium valproate (her final remaining chemo drug – which also happens to be an anti-seizure drug) because it’s been causing Eloise brain fog. A very tricky balance. This continues to be a very, very long road – as we all know, Eloise’s situation is a very complex case!

Unfortunately after a meeting with the epilepsy consultant and neurologist yesterday, Eloise spiked another temp and had poor obs again. After another night in hospital and more tests this morning it’s shown that Eloise now has Flu A. We’ve been sent home but have to go back in if she deteriorates. Without being able to take Calpol or Ibuprofen it’s a bit brutal for immunocompromised kiddies to ride out all these nasty infections.

Among this, she/we’ve also had Eloise’s EHCP review and accompanying assessments (speech and language, physio, OT etc) with the support of Eloise’s fabulous school.  We are hoping to pull her back a year so she has another year of nursery – hopefully with less time spent in hospital and more time to be a ‘normal’ kid and catch up with some of her development.  She is making great improvements with her development (she is a VERY determined learner in all areas) but each infection sets her back and she still has a long way to go on every front.  It feels like a constant game of cat and mouse.  If you ever wonder what parents with complex needs kid spend their time doing, all we can say is it is very full-on, unpredictable, chaotic, intense and with little/no respite…  Everything we do has to be so ‘intentional’ and worked through.

In theory, Eloise is due to have minor surgery on Tuesday at St George’s to have her port removed – but we will have to see how she gets on with fighting off her flu A to see if she is well enough.

For those that pray:

  • Please pray for protection for her when she has these infections – such as flu at the moment. It impacts her neurologically. The first symptom is her shaking/tremor and her seizures significantly worsen.
  • Pray she recovers from this flu and can somehow have the surgery on Tuesday (she needs a GA and therefore needs her airways to be ok).
  • Pray for seizure control! Give thanks that she has a great epilepsy consultant who champions Eloise’s cause.  Pray for wisdom on the best course of action in the short, medium and long term. The seizures seem to be caused by structural changes, such as the calcification in her brain.
  • Pray for energy. The regular but unplanned hospital admissions and subsequent efforts to regain lost muscle mass and strength (and re-potty train) absorb a lot of Eloises and our energy.  It has certainly felt very unpredictable and chaotic these past few weeks – trying to have a “normal” life and keeping ‘the show on the road’ whilst being in and out of hospital is hard.  Pray for additional resilience, strength, energy and peace for us all as a family.
  • Give thanks that on the BIG front of fighting ETMR brain cancer Eloise is on the winning side! Give thanks for the care that Eloise continues to receive from so many doctors, nurses and numerous health professionals.  We are incredibly grateful.

No Evidence of Disease on MRI scan! (…but not all clear)

The scan showed no evidence of any tumour regrowth! Hallelujah and … phew!

It’s been a pretty hectic and stressful past couple of weeks and these were the lines we wanted to hear. We are extremely grateful to the NHS for their combined and prompt response to Eloise’s seizures restarting, resulting in rapid appointments with:

  • An epilepsy consultant
  • An MRI scan
  • A Neurosurgeon
  • A review of the results by a Neuro-radiologist
  • An EEG test
  • Eloise’s scans being discussed at the Paediatric-Neuro-Oncologist MDT meeting
  • A short call with an Oncologist (full appointment happening this coming week)

In summary, Eloise’s scan shows no evidence of the cancer returning but does show other changes. These include a small build-up of fluid (which in the words of the excellent neurosurgeon “isn’t very exciting”) and some increased marks/lesions of calcification in another area of Eloise’s brain. There isn’t a clear consensus on why Eloise’s seizures suddenly returned or what the increased calcification in Eloise’s brain means. It is potentially a result of Proton beam therapy but given it is such a new treatment and not normally given to children so young, there is no data to back this up.

For now, we will slow down Eloise’s drug-weaning schedule, to give the brain more time to get used to the changes, continue to watch how she does and monitor changes/lesions in future scans.  We need her to come off the sodium valproate so the next few months will be a long process (and hoping that somehow she can, without seizures starting).  We will also see what the EEG results show.

How do we feel?

So relieved that the cancer hasn’t returned.  So, so grateful! Ultimately this is the big win.

Grateful for the love and dedication for Eloise by all the staff involved (a surgery slot with the neurosurgeon had been penciled in for Eloise just in case she needed it – which she didn’t – showing both the dedication and also the recognition of the potential seriousness).

Thankful that Eloise doesn’t appear to have had a seizure for the past week.

Conscious that we might be in this (and other) ambiguous situations for many years to come – medical professionals won’t know for definite what is causing changes/any new symptoms, and can’t necessarily treat the issues. Brain tumours and being on the cutting edge of new treatments (that have done their job in killing the cancer!) cause other issues.


For those that pray

  • Give thanks that there is No Evidence of Disease!
  • Give thanks for all the love, care and prayers we have received from the NHS, family, friends, and colleagues
  • Give thanks that Eloise is getting stronger and enjoying life, and that her seizures appear to have stopped over the last few days.  Pray they continue to stay away.
  • Pray her brain heals and that it is protected from side effects from all the changes and treatment
  • Pray for wisdom, patience and peace as we work out the best path to reduced drugs, improved health and liaising with various health professionals

MRI brought forward – please pray and ask others to pray too

It’s been a busy and hugely challenging week, where Eloise has had seizures almost everyday.

The reoccurrence of Eloise’s seizures have accelerated a lot of conversations, hospital admissions and tests.

Yesterday we saw Eloise’s Epilepsy consultant, who graciously gave us a lot of her time for us to pepper her with a lot of our questions.

Whilst the consultant was expecting Eloise to potentially have seizures again, she perhaps wasn’t expecting them at this time, especially with Eloise on such high dosages of anti-epileptic drugs. Unfortunately the consultant is not convinced that the seizures are a result of reducing Eloise’s Sodium Valporate and more likely to be as a result of surgery/scarring or something irritating her brain (eg a tumour). Mercifully the consultant noted that the seizures, in their current form, are unlikely to be damaging for Eloise in the short term. Eloise has been referred on for another EEG test – to see if we can identify the area of the brain affected.

As a result of the meeting, we will make some minor tweaks to Eloise’s meds while we wait for the results of her MRI and wait for advice from a new neurologist at St George’s. Seizure control is looking like it might be very tricky to manage (no matter the underlying cause).

The MRI has been brought forward from mid December to this Monday morning (Oct 31st). We will then meet with the Neurosurgeon on Monday afternoon (a routine appointment that was already in the diary). The scan and Eloise’s case will be discussed at the MDT meeting on Friday and we will then speak with Eloise’s Oncologist in the afternoon.

Some of these appointments were routine appointments that have been booked in for a while but others were not and it feels like a rapid acceleration of concern and medical intervention.

The return of seizures has been extremely disappointing and traumatic for all of us and we had hoped that we might get some level of assurance and comfort from meeting with the epilepsy consultant. However, we ultimately left feeling concerned and distressed about how disconcerted she (and the other medical professionals) are, evidenced by the MRI being brought forward. Everyone is just ‘hoping the MRI doesn’t show any tumour recurrence’ and the seizures are from scarring, but the language being used by medical professionals is certainly not as confident as we’d like…

This is not a situation we wanted to be in and it is very challenging and anxiety inducing being fast tracked for tests alongside not knowing if the seizures will be controlled.

Please pray for us in the build up to and results of this very important scan.

Specifically:

  • Pray for a clear MRI scan that shows NED and no new issues – to be honest this feels very nerve wracking right now.
  • Pray for peace for us all, including Anna and our wider family this week.
  • Pray that we have a helpful meeting with the Neurosurgeon on Monday
  • Pray that we get clarity and peace on the cause of the seizures and that we can treat and control the seizures.
  • Pray the seizures stop!
  • Pray that Eloise can enjoy life in all its fullness and that these seizures don’t slow down her recovery or ability to make healthy friendships at nursery

Eloise at home

Thank you for those that have been praying. It was a challenging day yesterday but Eloise is home and the CT scan showed no hydrocephalus. We had a nerve racking few hours as were told the CT scan showed ‘pathological changes’ that needed comparing with previous scans, so these were sent to St George’s. A neurosurgeon looked at them and said there is nothing acutely concerning and no obvious changes. So nothing to do for now and we will wait to see how Eloise does while we wait for the next MRI.

Today Eloise had a very short episode again. Please pray these stop and we can work out how best to support her. She’s on 2 other very strong anti-epileptics in addition to the sodium valproate (that she had at a super charged dose for chemo purposes but also acts as an anti-epileptic).

For those that pray:

  • Pray for wisdom for the meetings we have on Wednesday with the oncologist and epilepsy consultant
  • Pray we get a reassuring MRI soon
  • Pray for these episodes to stop
  • Pray for continued peace

Please pray – seizures have returned

It’s been a while since we last sent out an update.

Since then Eloise has settled into nursery really well, with the excellent care of all the Rydes Hill school family, her teachers and from her 1:1 support.

Eloise has started to develop some genuine friendships and is especially enjoying ballet on a Wednesday morning. Her energy is returning, she is slowly developing her language and her eating has drastically improved. It’s been wonderful to see Eloise’s love for people, her humour, and her zest for life return – it can be quite infectious. She’s a funny girl and likes to be the life and soul of the group.

Like many nursery children – Eloise has picked up a seasonal cold. She picked this up in her second session at nursery. However, unlike other children, Eloise hasn’t really shaken it off fully and transitions between varying degrees of cough, snot and chesty splutters.

At the same time we have started to very slowly wean Eloise off one of her chemo drugs, Sodium Valporate (it’s used for various things but Eloise has it at a super high dose for chemo purposes). The plan was to do this slowly over a number of months until she is completely off it in early January.

We think Eloise’s development has been hampered by this drug (which makes you very drowzy and gives you “brain fog”) and we were really looking forward to her reducing and stopping this drug. In general Eloise has been doing really well since the start of term and the reduction so far in sodium Valporate.

Last Friday Eloise had an odd moment when she lay down on her side and jolted very briefly. Then on Sunday Eloise was extremely wiped and spiked a temperature of over 38 – which meant a day and overnight stay in the Royal Surrey Hospital to have a range of tests to determine the source of infection. After a number of tests (mostly to exclude some serious infections) it was assumed that Eloise had a cold and was discharged with some antibiotics.

Eloise rebounded quite strongly and went back to nursery on Wednesday. However on Friday, nursery phoned us to let us know that Eloise had just had another likely seizure (Eloise’s 1:1 is an ex-Paedatric nurse) – which was shortly followed by another seizure a few minutes later. (Eloise is currently on an exceptionally high level of anti-epileptic drugs already…)

After an afternoon of phone calls, it was agreed Eloise next MRI would be brought forward and we agreed to be vigilant and go into hospital for a CT scan in the event of another episode (to check it isn’t hydrocephalus).

This morning, Eloise had another short seizure. We are currently in hospital waiting for a CT scan. Please pray that we can get to the bottom of what is causing these new seizures, that it is something we can treat and isn’t serious. Please also pray that Eloise doesn’t get too distressed by these episodes and they don’t knock her recent improvements.

How do we feel:

  • It has been utterly wonderful to see how well Eloise has been doing this past 6 weeks. She has been doing so much better and we are so proud of her.
  • The seizures have been quite traumatic. Not knowing the cause (yet) is a hard space to be in. And not knowing if they will continue or not is also difficult. It also brought back lots of memories too. It’s also reminded us that this continues to be a battle and that even 2 years on, life isn’t simple – it’s unpredictable, and that there might still be bumps in the road. We hope this is just a little bump, and that somehow this isn’t a longer term issue.

For those that pray:

  • Pray for us to get to the bottom of this – that it’s nothing serious (certainly not any tumour!). Pray it’s short lived and can be dealt with.
  • Pray for peace for us. It’s been very disappointing and distressing.
  • Pray for Anna – she witnessed the episode this morning and said in her own words that Eloise was having a ‘moment’ (she remembers her previous seizures which we called ‘moments’). Pray it doesn’t trigger stuff for her and make her worried/anxious.
Anna, Eloise and Kobe enjoying story time before bed on Thursday

First day at nursery and an update on next steps

Today Eloise had her first (well 1 hour session) at nursery school!  A big milestone for any child, but for her, this feels enormous.  To have survived and to have been able to attend a nursery is incredible.

We are forever indebted to the fantastic Rydes Hill Preparatory School and Nursery for everything they have done to enable Eloise to join.  It is overwhelming how much work has had to go in, in order for Eloise to join – including (but not limited to) training from Community Nurses, Epilepsy nurses, adjustments and visits from Occupational Therapists, Physios and Speech and Language therapists.  Rydes Hill have been kind, generous and have done everything they can in order for Eloise to be able to attend and be able to participate.  Eloise is only going for 1-1.5 hours, three days a week, so it’s very short as she gets very tired – but it’s the first step in her moving towards a more normal life as a 3 year old.  Eloise today walked in confidently and appeared to enjoy it (a visit from the school dog was a clear hit) and as soon as she got in the car to come home she asked to go to nursery again.  So, so far so good!

Here is Eloise today.

How do we feel?

Honestly, I thought today might have been more emotional – but it surprisingly wasn’t.  Perhaps we’ve actually just had so many ‘big’ days in Eloise’s life that we’ve got used to ‘big days’.  Or perhaps it will just catch up with us when we have settled in and start having a bit of time to think….  We might still just be living on adrenaline as we have done for the last two years (it was exactly two years ago that we first went to the Out of Hours suspecting Eloise might be having seizures).

Children with cancer often get given a special bead for each procedure they have during their treatment.  Here are Eloise’s beads of courage. These beads are from the end of January last year – August this year.  Over 1,000 beads representing procedures Eloise has had to endure and be courageous for.  From surgeries, proton beam sessions, intensive care admissions, chemo, IV infusions, stem cell collection, stem cell transplant, anaesthetics, MRIs, CT scans, EEG’s, blood tests, blood transfusions, community nurse visits, NG tube placements, dressing changes, nights in hospital etc. etc. 

These are a visual reminder of what Eloise has had to go through in order to survive to this point and get to nursery….  And we will hang these up in her room to remind her that she is a warrior – and if she ever feels like she can’t do something, we will use these to remind her of all that she has already accomplished.

What next for Eloise?

The next few weeks and months will be a process of weaning Eloise off the final chemo protocol drug (which will take approximately 6 months).  In addition, Eloise will have lots of tests to get a better picture of any side effects of the tumour/hydrocephalus/treatment – for example this Friday she has an audiology test in London (after her hour at nursery).  Other tests include kidney functioning tests, and endocrinology tests. Unfortunately, children with paediatric brain cancer have lifelong after-effects from their cancer and sadly, its treatment (but we pray for a miracle that these will be very minimal for Eloise).

Eloise continues to have her port in place – but she now only has to have bloods taken by the community nurses every other week!  In a few weeks’ time, once Eloise has completed more of her tests, we will meet with the oncologist to discuss her having minor surgery to remove her port.  Eloise will continue to have her shunt in place life-long.

So the majority of the next few weeks is focused on settling Eloise into nursery, weaning her off one of the chemo drugs, attending tests/appointments and ‘rehab’ i.e. trying to help Eloise get stronger.  It’s going to be a very long process (and we need to remind ourselves of this, when we are feeling impatient and just wish everything was ‘normal’) but we hope and pray that each day Eloise loves life a bit more, develops and thrives.

For those that pray:
There’s a lot to be thankful for:

  • Give thanks that Eloise was able to start nursery today.  Give thanks for all those involved to enable this to happen – for their dedication, care and support for Eloise.
    Give thanks for the NHS and all the medical staff that have been involved in each of those 1,000 bead procedures. 
  • Give thanks that Eloise has had pioneering treatment and her last scan showed there to be No Evidence of Disease.
  • Pray that Eloise gets physically stronger – in particular, for her tremor to reduce.
  • Pray for limited side effects of her tumour/treatment – pray for her brain, for her eyes, for her ears etc.  Pray for her development – that nursery and a slightly more ‘normal life’ will enable her to develop.
  • Pray that her body heals much faster than expected from all that’s been thrown at it.
  • Pray that she remains cancer free (particularly as we’ve stopped treatment).

Also a little highlight from the past two weeks, Eloise and Anna being flower girls at Mel’s cousins Wedding. What a special day.

Celebrating the end of treatment and a positive MRI result

Yesterday was a momentous day. We found out that Eloise’s latest MRI scan was all clear and Eloise got to ring the bell at the Royal Marsden to signal the end of all her active cancer treatment. Quite simply, this is a stunning statement and wonderful news. We are so grateful and indebted to so many.

Statistically and when we first met with the Oncologists it was unlikely that Eloise would get to celebrate another Christmas. 18 months on and after countless miracles, including successful highly complex brain surgery, access to cutting-edge radiotherapy and pioneering chemotherapy protocols Eloise is doing well and there is no evidence of cancer in her. Incredible.

Whilst Eloise continues to have medical challenges to conquer, today is a day to celebrate. A day to be thankful to God. A day to celebrate Eloise and all she has overcome.

Thank you for all your prayers, love and support. We wouldn’t be where we are without it, we are convinced of that and are forever grateful.

We will provide further updates about “what next” in due course but for now, we hope you enjoy watching Eloise ringing the bell to mark the end of her treatment.

(Note:  The Royal Marsden doesn’t allow family into the hospital, so Eloise rang the bell twice. Once on the ward with some of the nurses, dieticians, healthcare assistants and Drs who treated Eloise and then again in the Maggies Centre, outside the hospital, where family could join to celebrate with Eloise)

Eloise receiving a certificate to mark the end of treatment