Not staying in hospital endorphins

So Eloise had her intrathecal chemotherapy yesterday!  It was a long day for us both (Mel and Eloise) and she didn’t enjoy being nil by mouth until 11.45am, but we got through the day.  Eloise seems to have tolerated the chemo very well with no fever and even came home last night very excited (we call it the ‘I’m not staying in hospital endorphins’)!

In the afternoon we had a useful meeting with Eloise’s oncologist and we’ve decided to slightly reduce one of her chemo drugs to see if it helps with her tremors (up until now, this drug has been increased week-on-week).  We are hoping it helps.  It was also good to discuss Eloise’s overall health and be reassured that much of her tiredness is to be expected so soon after high dose chemo and stem cell transplant, proton and now her continued active chemotherapy treatment.  It was helpful to be reminded that this is a very, very long game and to have realistic expectations.

The next couple of weeks we have various appointments – community nurse visits, meeting with Eloise’s Proton oncologist, speech and language therapist appointments, physio appointments.  We are glad Eloise is starting to now receive some of this support ‘in the community’ and not just in hospital, as she is likely to need some of this for the foreseeable future and beyond chemotherapy treatment.  We are beyond grateful to the marvellous NHS!

For those that pray:

  • Give thanks that Eloise has recovered from her cold and was able to have her intrathecal chemotherapy yesterday.  Give thanks for the wonderful Drs, nurses and staff.
  • Give thanks that she tolerated the intrathecal chemotherapy well with very few side effects.
  • Pray that Eloise gets stronger and that the various appointments are helpful.  Pray Eloise’s tremors and unsteadiness improve.
  • Pray Eloise continues to be NED!

Please also pray for other families affected by ETMRs.  In particular please pray for Savannah (who we mentioned earlier last year as she is 1 month younger than Eloise), who’s cancer has unfortunately spread despite intense chemo and protons.  She is enrolling on a CAR-T clinical trial which aims to galvanise the immune system to fight this dreadful disease.  Pray for strength as her family are separated and for this treatment to work for Savannah (and for ETMR’s in general, as it would be a game-changer).

Try again (Chemo #6)

After last week’s delay, Eloise is due to start her 6th round of maintenance chemotherapy tomorrow.  Please pray this goes ahead and she can have the intrathecal chemotherapy.  We will also meet with Eloise’s oncologist to discuss various things, including her tremors.

Quick prayers that the chemo can go ahead tomorrow would be really appreciated!  We’ve tried our best to avoid Covid and other infections this week and Eloise seems quite a bit better from her cold – so we are hoping all will be ok. She seems quite a bit stronger than last week – and we assume she must be feeling a bit better as her sense of humour has been far more evident this week!  Love her!

For those that pray:

  • Pray that Eloise remains NED (No evidence of disease)!
  • Pray that the intrathecal chemo can go ahead (that Eloise is now well enough) and that Eloise tolerates the chemo, with limited side effects (e.g. fever, limited loss of appetite etc).
  • Pray that Eloise tolerates being nil by mouth ahead of the general anaesthetic

Hermits for the next 7 months

Unfortunately today Eloise was unable to have her intrathecal chemotherapy. Eloise and I got to the Marsden early, but unfortunately the consultants feel she isn’t well enough to have a General Anaesthetic and for more chemo. Her cold is still on her chest a bit.

Rather disappointing as we thought ‘we were doing ok’ as she’d avoided a temperature spike, which is true – but she’s still not well enough to tolerate more chemo etc this week.

So her chemo round has been pushed back and will hopefully happen next week (provisionally on Wednesday), so long as she is well enough and recovers by then.

This obviously again reminds us that life with a kid battling cancer isn’t straight forward and that we need to keep trying to avoid any infections as much as possible (in order to avoid serious side effects of the infection and also avoid chemo or scans being delayed).

So if we look like we are becoming even more of a hermit (especially as it appears there are more infections around at the moment, than during last year when everyone was in lockdown/having restrictions) you know why! Hermits, whilst also trying to ensure Eloise has experiences and develops. It’s going to be a long 7+ months.

For those that pray:

Pray Eloise fully recovers from her cold and she’s able to have intrathecal chemo next week.

Thank God that he has brought Eloise this far. Pray that the delays in treatment don’t impact her being NED and that she remains in complete remission.

Pray for her tremors to stop and balance to improve – and wisdom to discern what’s causing this and to act in the best way to treat this. Pray for Eloise to regain strength.

Pray for all the Drs and nurses involved in her care. Thank God for their love, care, knowledge and support.

Pray for other families also battling this dreadful disease.

Quick prayers for Eloise tomorrow – starting Chemo (#6)

Tomorrow Eloise has her 6th intrathecal chemotherapy at the Royal Marsden.
We would value prayers for:

  • Logistics to go smoothly and for Eloise to tolerate being nil by mouth before the general anaesthetic. Please pray she’s not too ‘hangry’.
  • For limited side effects eg no temperature spike and any loss of appetite to be limited etc. Eloise’s cold is slightly better but still lingering – please pray this doesn’t impact her treatment or how well she tolerates the chemo.
  • Continued prayers for her tremor to dramatically improve, her energy levels to increase, her walk to be more steady and for her to smile and enjoy life more!
  • Pray the chemotherapy round does its job and Eloise continues to have No Evidence of Disease!

People have asked when her next MRI is due. We don’t have a date for this yet but it’s expected to be at the end of this month/beginning of February

Holding onto Hope for 2022

Eloise has had Christmas out of hospital! This has been a real treat and an answer to prayer. Thank you to those that prayed!  The girls have enjoyed seeing family at different points and have been thoroughly spoilt.

Eloise has been doing a bit better (than in early December) but to be honest it’s hard to tell. On the plus side, her appetite has improved significantly. Her energy levels are up and down and she needs quite a lot of ‘managing’ but we’ve had some special times and even trips out. Her tremors have possibly got worse (again it’s hard to tell exactly as it all becomes a blur) and her walking/unsteadiness is mixed. She appears to have had a chesty cold over the past few days (not covid), but no temperature as of yet – but without being able to take calpol etc it’s pretty rough for her on top of all the other things she is coping with each day!

Eloise has her next round of intrathecal chemo planned for this Wednesday – so we are gearing ourselves up for that, alongside starting back to work and school for Pete and Anna.

How do we feel?

  • Grateful for Christmas all together!
  • Unsure of how to think and feel! Eloise is doing ok in some ways, but not in others. We have absolutely no idea what to expect/benchmark her against anymore. We never know what is causing her issues – there are just so many variables. And we don’t know if any of these issues are a sign of something bigger (relapse) but we desperately hope they aren’t. And we don’t know what to expect in the future, both in terms of her health and development,  in the coming days, weeks, months or even years.  It’s very weird…
  • Aware of a challenging 2022 ahead, especially for Eloise (let’s be honest, we can’t exactly make grand plans!). We pray that it will be less ‘dramatic’ and turbulent than 2021 and that it’s a year of Eloise building strength and health.  This feels like a slow burn, but we pray that by the end of 2022, that Eloise is still with us, that she is NED and that we can see how far she has come on.
  • We are acutely aware that Eloise has such a high chance of relapse – and despite the best treatment in the world (proton/chemo/surgery), the vast majority of children still don’t survive.  It’s very weird as it can feel like a very unfair and cruel game of Russian roulette.  None of these children and families (many we now call friends) should have to go through any of this.  We pray for Eloise, but also for ALL families faced with this dreadful disease.

For those that pray:

  • Pray that Eloise remains NED.  Please keep praying for this and praying against relapse.  We continue to live in the very real tension of holding on in faith for a miracle to be done in Eloise’s life and for her to survive and have life in abundance, whilst knowing the reality of the deadly cancer.  At the same time we also wish it didn’t require a miracle of defying the odds and for all ETMR patients to survive!
  • Pray for Eloise to get stronger – for her tremors to reduce and stop, her balance to improve and her sensory issues to become less and less.
  • Pray that Eloise recovers from this cold ahead of her next round of chemo on Wednesday.
  • Pray for wisdom as we work out how to support Eloise’s development when so many ‘normal’ things for toddlers are off-limits.
  • Pray for other families with children battling ETMRs and brain cancer.  Pray for greater knowledge about how to treat it – and for children worldwide to have access to this treatment!

Enjoying Christmas Day at home

Miracles at Christmas

The last few days we’ve been reflecting on the big and the small miracles we’ve seen this year, and there have been many.  This year has been a massive battle, but we’ve been so aware of heavens’ armies coming in and fighting the battle for Eloise and us.

Throughout much of this year we have asked people to pray specifically about different issues and so often it feels that as soon as we ask people to pray for a specific thing, the tide turns.  We go from things getting worse in a particular area, to Eloise improving in that area.  It’s often not dramatic (sometimes it is though), but it has felt pretty consistent – after asking people to pray for something specific, Eloise starts to ‘win in that particular area’. 

Here are a few:

  • This week alone, we’ve seen Eloise really improve in many areas – walking, eating, talking, very few/no noticeable tremors and her overall energy has dramatically improved.  She’s like a different child.  And she’s even having strength to show determination and be toddler like, frequently saying ‘No!  I do it!’.  We’ve had the privilege of seeing family we’ve not seen for ages and for Eloise being strong enough to see them.
  • The big miracle of Eloise having a gross total resection (GTR).  This is still unfathomable.  Inoperable tumour to getting a GTR (and first being told they thought they had left some in!). 
  • A miracle that Eloise doesn’t appear to have regular partial focal seizures.  This was not a given.
  • The miracle that Eloise got access to proton beam therapy even though she was under 2 at the time (and in theory the NHS don’t do it for under-3s). 
  • The miracle that Eloise got access to her maintenance chemotherapy – being the first in the UK to receive this chemotherapy of intrathecal topotecan.
  • The miracle that despite the dreadful odds (both dreadful location of her tumour in her brain + the awful diagnosis of it being an ETMR) , that Eloise is with us this Christmas and that at her last scan she was shown to be NED.  And fundamentally it’s a miracle that Eloise is how she is – able to walk, talk, socialise and this week, even smile and joke a bit more.  Even Anna asked this week ‘Wow mummy, how does Eloise think when she had a massive tumour in the middle of her brain?’
  • But as we know, the biggest miracle at Christmas is Emmanuel, God with us.  And for us, nothing has been further from the truth this year.  Despite the turmoil, pain and even at points not even knowing if Eloise would make it through the next few hours of that day/night – we can say that God has been with us.

To be truthful, the above is also hard to write because so much of the year has been a yo-yo (I’m virtually nervous to write this in case Eloise swings back before I post the blog).  Eloise has done dramatically better this week, but we know all-too-well, that things can change in an instant – literally. 

So we’d be really grateful if you could pray for the next few days.  After the year we’ve had, we would love to be together for Christmas Day.  Pray Eloise (and we, as we are most likely to bring it into the house!) avoid infection, Covid and any hospital stays. 

Please also pray for those that we know who have lost their children to ETMR’s this year – pray for them as they face Christmas without their beloved children.

Thank you for all the love, support, cards, gift and food this year, we are more grateful than you will ever know. We are especially grateful for all those who have stood with us in prayer and faith – please do continue to pray for a big miracle to be done in Eloise’s life – for her to be cancer free and live life in all its fullness!

Port is in, Eloise is exhausted but Christmas is bringing some fun

On Thursday Pete and I were walking into Anna’s nativity when we get a call to ask if Eloise can come into the Marsden in a couple of hours’ time for a minor op for the insertion of a port later that day.  We agree to it (of course we would!), continue to go and watch Anna in her nativity (she was Mary – proud parent moment) and exceptionally grateful that we got to see Anna in the nativity in person this year.  We dash straight home for Pete to join work, and for me to take Eloise to the Marsden for another general anaesethic and operation.  It was pretty rough on Eloise – she had to have bloods taken with no numbing cream, whilst being nil by mouth, and then had to have the MRSA wash… and she was already very exhausted, especially having had intrathecal chemo on Monday.  Eloise tolerated it, and the fabulous Marsden nurses spoilt her with some bravery presents.

Eloise continues to be exhausted, unsteady on her feet and eating very little (therefore relying on her NG feed, which is also meaning she’s often waking in the night and we are all getting a lot less sleep).  She really is, comparatively to a few weeks ago, quite weak.  She always puts in a big effort but her energy drops significantly during the day.

But we’ve continued to try and have fun.  We’ve had a Christmas celebration with my (Mel’s) family and have this evening had a doorstep visit from Santa (organised by the charity Momentum).  Both girls were surprised – and Anna particularly chuffed.

How do we feel?

Christmas is an odd time – we feel utterly, utterly grateful to have a Christmas with Eloise that we statistically shouldn’t have had with her.  That in itself is very emotional. 

But it is also a sad time as she’s weak at the moment.  It’s hard to look back to photos of her last Christmas and see how much the cancer and its treatment has affected her and ‘stolen from her’ this year.  But also at least now her seizures are much more under control too.  The treatment has been the best in the world and has been life-saving and means we are having this Christmas with her, but it has, and continues to come at a cost.  We continue to think that the maintenance chemo is worth doing – if it increases her chances of survival, even by just a little bit, then it’s worth it – because nothing can really be done if Eloise relapses.  We desperately want many, many more happy Christmases’ with Eloise – and our hope and prayer is for her to outlive us!  So it’s a real mixture of emotions.

For those that pray:

  • Please pray that Eloise turns a corner and gets miraculously stronger over the next few days in the run up to Christmas.  She has no planned GA’s or procedures so please pray she can recover from a very challenging few weeks and can now get stronger. 
  • Pray against any further infections that could lead to another emergency hospital admission.
  • Pray for Eloise to have an abundance of joy this Christmas!
  • Please desperately continue to pray that Eloise remains NED.  When Eloise is weak and poorly, it’s hard not to worry that something bigger might be going on.  Pray she forever remains NED from cancer.

Currently having intrathecal chemo (#5) …

The last few days have been a bit unpredictable – Eloise’s midline stopped working so bloods were taken ‘normally’ (i.e. via a needle in the arm) and she also pulled her NG tube out, which had to be replaced. So, we’ve had a few extra trips to hospital. As always, we’ve received excellent care and we managed to have the whole weekend without stepping into a hospital – yay!

Eloise has just gone down for her next intrathecal chemo, which is still being done via lumbar puncture for the time being.

For those that pray:

  • Pray that she tolerates this chemo well. Other times she’s sometimes spiked a temperature in the evening after. Please pray she is ok tonight and we don’t have any additional hospital stays.
  • Pray Eloise gets stronger. She’s still having tremors at times and is quite weak, comparatively to a few weeks ago and very much so in comparison to her peers! We are spending lots of time just pottering around the house and trying to be creative in ways to get her to stretch her legs/exercise as she’s finding parks/play areas too cold and just wants to be cuddled.
  • Pray against long term side effects of her treatment. We’ve become very aware of how Eloise has ‘stalled’ developmentally this year and is weaker in many ways than she was at 18 months. She’s still struggling with tiredness and probable somnolence from Proton therapy, alongside the chemo and numerous other things she has currently going on! This can be pretty hard when society ingrains the importance of development in the ‘early years’. Please pray against these and the long-term side effects. Pray that much of this is temporary and one day soon, that she will thrive, smile more and be able to live life to the full.

Setbacks but praying Eloise now gets stronger

The last few days have been pretty full-on.  Eloise ended up going into St Georges on Sunday afternoon, ready for minor surgery to remove her hickman line on Monday.  Unfortunately, as Eloise was on the emergency list for theatre, and needed to just go when a slot was free, she didn’t actually go to theatre until 7pm.  So she had the whole day waiting in an isolation room being nil by mouth (including her NG feed).  Even for a toddler who doesn’t want to eat much/only nibbles at best – that is hard.

But the surgery went well.  Her hickman line has been removed due to the infection.  We are waiting for cultures to see if it entered her bloodstream but we are really hoping we have caught it in time…   Eloise now has a ‘midline’ bandaged up on her arm, which will be used in the short term until a new hickman line/port is put in (another GA/minor op).  She was rather surprised this time to wake up from her ‘magic sleep’ to her wiggly line (ie hickman line) having disappeared.

Eloise eventually came home from St Georges today and is pretty weak.  She’s the weakest she’s been for a long while.  Shunt adjustment + chest infection + infection in her hickman line and minor op over the last 9 days means she’s very tired, wobbly on her feet.  Unfortunately her appetite is exceptionally low again and she doesn’t want to do much at all, and she still can’t have calpol/ibuprofen for any relief.  We are praying she can push through and that she just needs to build up strength and nothing else is going on – as most Dr’s and nurses say ‘it’s hard to tell as she has such a lot going on!’.

In light of the above, it’s been decided that Eloise’s intrathecal chemo should be delayed until next Monday (6th) so she can build up her strength before another round of chemo (it was scheduled for tomorrow).  We would be grateful if you could pray that Eloise quickly improves over the coming days so that she is strong enough for Monday.

How do we feel?

A little cream crackered! Isolation rooms on hospital wards are pretty hard places to be with a toddler – not being able to leave, but trying to get Eloise to do something so she doesn’t ‘weaken’ too much and lose too much muscle strength.  And lack of sleep due to Eloise being poorly in the night and/or all the hospital observations and toing and froing is still quite exhausting.  But we’ve made it through the last week and a half…  Eloise has just gone through, and continues to go through, so much!

It’s been over a year since we found out Eloise has a brain tumour (found out 25th Nov 2020 – we actually had to look up the precise date as much of the year has become a blur!).  What a year.  Lots of reflections…too many to write here!  For those that haven’t always followed the story, this page gives a summary of the journey so far.

The past week has also been a bit of a ‘wake-up call’ again about how fragile our girl still is.  A chest infection is really quite serious for her and the implications are quite wide.  It’s hard for us as we continue to face a winter of ‘keeping her safe’ whilst trying to have some normality and opportunity to interact with others – especially other children.

Despite the setbacks and challenges of the past week and a half, we continue to try to keep the bigger picture in mind – that on the bigger cancer front, Eloise, at the last scan, is winning. She just needs to keep winning the smaller (more minor, but sometimes still potentially serious) battles too.  Keep fighting our darling Fighter for Life in Abundance.

For those that pray:

  • Pray for Eloise to get stronger quickly!  Pray that there are no other issues going on and that its just a matter of getting stronger.  Pray against further infection or any other ‘set backs’.  Pray her appetite increases again and that she puts on weight.
  • Pray that she continues to be NED.  Its still a terrifying prospect of her relapsing – pray this amazingly never happens.
  • Pray for us as we approach the next few weeks – balancing some low-key Christmas fun, with a poorly child and one prone to serious infection.  Pray for wisdom and lots of fun.  Pray Eloise has more energy and smiles more than she has been.

Oh rats! Minor surgery probably on the cards this week…

Poor Eloise has had a pretty rough week that has involved some rather (logistically) trying hospital hokey-cokey:

  • Sunday: (IN and then OUT) – Day spent in St George’s A&E getting shunt adjusted.
  • Monday: (OUT and then IN) – Eloise went to bed at home but then woke in the night with a fever and we take her into the Royal Surrey Hospital. Drs. start tests, IV antibiotics and monitor her.

    (We post the last blog – Some days are harder)
    After the blog was published, Eloise continues to have a fever and the Drs and Nurses struggle to keep Eloise below 40 C and she has D&V. (Mel deserves an award for doing the shift that night!)

  • Tuesday: (IN) – Eloise starts to improve but is still weak. Chest x-ray is inconclusive, but a viral chest infection is suspected.
  • Wednesday: (IN and then OUT) – Eloise has improved enough to think about discharge but at the 11th hour (or 39th to be precise) her blood cultures start to show signs of a bacterial infection, only for the microbiologist to later confirm it is ‘false positive’ – we are then discharged and go home with additional medicines.
  • Thursday: (OUT and then IN) – Get a call from the Royal Surrey to inform us that Eloise has tested positive for an infection in her Hickman line and to come straight in for further antibiotics and more blood tests.

The current plan (which could change at any time) is that Eloise will have IV antibiotics whilst arrangements are made to have her Hickman line removed and then replaced (a minor operation, most likely at St George’s Hospital – either in one surgery or two).

Eloise is also due her 5th round of chemo on Wednesday.

There are also lots of potential variations to what the next week could look like – for now we go with the flow and are exceptionally grateful for the professionalism, thoroughness and agility of the NHS to provide such amazing and responsive care for Eloise.

For those that pray:

  • Protection for Eloise: Please pray that Eloise does not start feeling unwell again, her tremors lessen, she doesn’t spike a temperature and that she continues to recover. Pray that the infection in her line doesn’t cause any issues!
  • Cannula/bloods: As Eloise’s line is now out of action, Eloise will now need to have a cannula/bloods taken directly out of her. Please pray this goes smoothly and is not distressing for Eloise.
  • Protection against muscle wastage: Unfortunately, despite Eloise only being bed bound for three days earlier this week she has suffered muscle wastage and is finding it challenging to walk around as she is weak. Pray for her to re-gain strength!
  • Thanks for seeing Anna’s worship: In amongst all the toing and froing to hospital, both Mel and I were able to attend Anna’s first class assembly (a worship service) this morning. This was extremely precious and it was a delight to see Anna enjoying herself so much. A big thanks to Yvonne (Mel’s Mum) who made this possible. The topic of the worship assembly was all about ‘Hope’ – what a divinely inspired and timed topic!
  • For wisdom around chemo for next week: There are quite a few moving parts for next week for the Oncologists to consider and factor in. Please pray for wisdom as they make their decisions and for favour with all the medical logistics.
  • For life logistics: Not knowing which hospital we will be in and when can be logistically challenging. The next week still involves normal things such as school, birthday parties (for Anna to go to), an inset day and work for Pete.
  • For Anna: We are so proud of how mature Anna handles all the constant changes of plan, but it is still hard for her. She misses Eloise every time she goes in.
  • For creativity: Please pray for creativity as we look to not just ‘entertain’ Eloise but actively help Eloise develop and grow.

Above all, we are grateful. Despite the daily chaos and constant challenges, we are grateful that Eloise’s last scan was NED, something we could only hope for earlier in the year.

Please pray for other ETMR families we know that are struggling in their battle or have lost their child recently. Our hearts break for them.