Some days are harder…

So the last day hasn’t gone quite so well.
Eloise has become unsteady and trembly, which we were concerned could be hydrocephalus, as it was similar to her previous hydrocephalus symptoms. So yesterday we spent the whole day in St Georges Hospital (Tooting) for Eloise to be checked, have a CT scan and then have her shunt adjusted by a neurosurgeon. Eloise was fab through it all and we were allowed home to monitor her.

However, Eloise woke in the night with shallow breathing and a high temperature. So it was another middle of the night trip to the Royal Surrey. She’s continues on IV antibiotics but is clearly fighting something, as her temperature remains high and she continues to be shaky. She is having various tests done and a chest x-ray.

The care of St Georges and the Royal Surrey has been exceptional (there aren’t too many places in the world you can walk in and get seen by a Neurosurgeon on the same day!) And some wonderful friends and family have all helped out with logistics with Anna etc. We are so grateful.

For those that pray:

  • Please pray the Drs can get to the bottom of her temperature (and where the infection is), and that they can treat it easily and she improves
  • Pray for Eloise to feel better – she’s unusually ‘off’. Most procedures she takes in her stride but she’s clearly feeling poorly and not handling these so well

Quick update

Thank you to those of you who prayed – we just thought we’d update you on a few things. 

Firstly, Eloise avoided the infection and long hospital stay.  Despite having a blood test which was positive for an infection in her line, a few days later it was negative. This is quite (very?!) rare, so we are very very grateful!  Thank you for praying!  Feels like she (and we) dodged another one there.

Also we met with the neurosurgeon at St Georges on Thursday.  It was a really helpful meeting going through the MRI findings.  In short, it’s a case of continuing to watch and monitor Eloise (the micro hemorrhage needs to be left for now and just monitored).  Afterwards, Eloise’s shunt was also re-calibrated to a higher setting to see if it helps with her current over-drainage/low pressure in her brain. 

In the meantime, Eloise is doing amazingly!  Her appetite has really picked up and her tiredness seems to be improving quite significantly (she’s needing to lie down less frequently).  She’s a little superstar!  We are so, so grateful for how Eloise is doing.  Importantly, Eloise is enjoying life and very slowly progressing.  Her steely character means she rarely complains and never gives up.

For those that pray:

  • Give thanks that Eloise avoided a line infection and long hospital stay.
  • Give thanks Eloise is doing so well and is NED. Pray she continues to progress, get stronger and develop. 
  • Give thanks for all the amazing doctors, nurses, specialists all involved in Eloise’s care.  We are continually astounded at the treatment and care Eloise receives.
  • Pray that she continues to be NED – that the chemotherapy kills any remaining cancer cells and that she continues to tolerate it well.

The fight continues, but Eloise is winning!

People talk about fighting cancer and it being a battle, and goodness me, it is. With grade 4 malignant brain tumours there are no ‘quick wins’ – it’s a long fight…. But today’s news: Eloise (with heaven’s armies) is winning!

This afternoon we spoke with Eloise’s oncologist who said her scans are stable. There is no sign of relapse. There is no sign of cancer! The post-operative changes/scarring are improving and look less cellular. The biggest relief and the biggest miracle! Thank you medical professionals, researchers/scientists, taxpayers, family, friends, those praying and journeying with us and most of all thank you to God!

That said, the fight continues.

The scan also showed a couple of things, which we hope, are both relatively minor:

  • Low pressure in her brain – most likely meaning Eloise’s shunt needs adjusting.
  • A micro-haemorrhage – possibly caused by proton beam therapy. Apparently nothing needs to be done on this for now.

We have an appointment with Eloise’s neurosurgeon at St George’s on Thursday so will be discussing these with him then.

Also, Eloise’s blood cultures from her admission on Wednesday/yesterday have come back positive, with a possible infection in her Hickman line. So we got called back this morning to give more blood samples and will see if they come back positive again. Hopefully they won’t, and we can avoid a long (approx 10-14 day) hospital admission for IV antibiotics. We will find out within the next 48 hours and go in if needed.

So Eloise continues to be ‘punched’ quite a bit, with the side effects of all the tumour and treatment, but ultimately she is winning and the brain cancer is losing! Pray it stays that way, that the punches are short-lived and tolerable and that there will be limited scars in the years to come.

How do we feel?
Relieved, grateful, in awe of how Eloise continues to be in Complete Remission. The news always comes with a rush of emotion. We are so grateful for our amazing girls.

We feel for other families that have lost their children to ETMRs – it’s just so unfair.

And also still grieved that Eloise continually faces so much. Our ‘minor’ things (micro-haemorrhage, low brain pressure, a possible long hospital stint from tomorrow, managed epilepsy etc etc etc) would, for most families still be quite a big thing. But in our world, they are smaller, compared to the ‘main thing’ of her ‘living/surviving’. And that’s still quite weird. We praise and continue to pray.

For those that pray:

  • Thank God that Eloise continues to be in Complete Remission and with No Evidence of Disease. We don’t take this for granted. This really is a miracle (look back at the odds we were first given!)
  • Thank God for all the amazing medics, scientists, nursing and caring staff etc that have enabled Eloise to get the best treatment and get this far. How remarkable. We are so grateful knowing that she is one lucky girl – billions upon billions wouldn’t have access to the latest science and treatment. We feel so blessed.
  • Pray for the other aspects on Eloise’s scan – that the micro-haemorrhage causes no issues, and that the shunt can be easily adjusted and help address the low pressure in her brain. Pray for Eloise to have limited symptoms of either of these two issues.
  • Pray against infection in her Hickman line. On the scale of ‘brain cancer’ this is small – it’s treatable etc. We would just like to avoid another long hospital stint if we can… as would Eloise and Anna!
Eloise with her much loved Kobe

Full week – Intrathecal chemo round 4 and waiting for MRI results

Just a short update.
Monday’s MRI at St George’s went as smoothly as possible. Eloise didn’t wait too long being nil by mouth and the shunt was adjusted whilst she was in recovery – absolutely amazing service 😄.

Tuesday was a day at home, only with a community nurse visit.

Wednesday was Eloise’s intrathecal chemo day – starting Round 4. She ended up still having it via a Lumbar Puncture this time and was excellent, as always, at having her general anaesthetic. It was bizarrely nice to see friends and staff in the Royal Marsden hospital. Eloise was allowed home in the afternoon and Anna was super excited to see her!

Unfortunately, Eloise spiked a temperature in the evening so we ended up taking her into the Royal Surrey overnight. She was given IV antibiotics, and various blood tests and cultures were done to check she’s ok. We think it was just a reaction to her intrathecal chemo, which with coupled with a minor cold, was just a lot for her little body. She stayed in overnight but was allowed home today – she’s a little wiped but all ok. 3 hospitals in 3 days… We feel so blessed by the love and care we receive at each and don’t take our healthcare system for granted!

Anna has been a superstar this week and has put up with all the changes.

We now wait for Eloise’s MRI scan results. We expect to hear from our oncologist tomorrow afternoon, following the MDT in the morning. Continued prayers for this would be great…

Crucial MRI tomorrow, please pray

Tomorrow is another critically important day for Eloise.
Tomorrow Eloise will have an MRI to monitor how she is doing.

Without wishing to sound like a broken record, it is hard to understate the importance of tomorrow’s MRI result.

In her last MRI (July 20), Eloise was declared in complete remission / No Evidence of Disease (NED) – which was simply amazing and life-changing news. Given the hyper-aggressive nature of ETMRs and the lack of evidence and very limited options for treatment, this was the best outcome we could have wished for.

It has been four months since then and statistically Eloise is still in the ‘danger zone’ for potential relapse (and unfortunately will be for a while yet). Therefore, tomorrow’s MRI scan is so critically important.

Please pray with us that the scan comes back clear, with NED.

Eloise will also start her fourth round of maintenance of chemo on Wednesday. We don’t expect to know the results of the MRI by then but will go ahead as planned while we wait for the results as Eloise has been tolerating the maintenance chemo well.

We have an appointment with Eloise’s oncologist on Friday to discuss the MRI.

For those that pray:

  • Pray the logistics of the week go smoothly – that Eloise isn’t too grumpy for being nil-by-mouth for two different general anaesthetics on two days, that resetting her shunt goes smoothly on Monday and that we navigate commuter/school traffic for a couple of early morning hospital appointments.
  • Pray for a clear-cut scan: Unfortunately MRI images can sometimes be difficult to analyse and there is a possibility that the result is ‘inconclusive’ or not clear. Please pray this is not the case and the radiologists (and other members of the MDT) are all aligned on their reading of the images.
  • Pray that Eloise continues to show NED: Pray that the scan shows no evidence of disease.
    If nothing else, please pray this.

The parallel world of parenting a toddler battling brain cancer

We’ve been debating about writing this post for a while.  Much of our recent posts have been celebrating Eloise’s victories – and there have been many, but we haven’t always given much of an insight into the parallel world in which we find ourselves.  The rules of life for us are just so different to life ‘before Eloise had brain cancer’ and most of this we had no idea about before we embarked on this journey. Sometimes our life can look ‘normal’, but underneath it really isn’t.  But in many ways this is becoming the new normal for us…..but then we have moments when we remember that it shouldn’t be this way!

So at the end of this post are some bullet points, to give you a flavour of our life at the moment.  Proviso….it’s very long and you might not want to read this if you don’t want to know the reality of medical stuff.

Update on the last couple of weeks or so:

Eloise has managed round 3 of chemo relatively well so far.  She’s been quite exhausted and has had a few new things – tremors and longer ‘absence’ moments but is ok (we hope these are just from exhaustion/side effects of treatment).  We’ve had various appointments, most notably with Eloise’s endocrinologist and occupational health therapist which have been really helpful.  She’s certainly been knocked since our last blog post, but she’s doing ok.

We made it to a wonderful family wedding in Pembrokeshire, Wales (again, the Marsden were great in organising for shared care i.e. open access at the local hospital).  It was a very long journey and took it out of Eloise, but she managed to go and stand outside and see her Uncle Ellis get married to the beautiful Alexandra. 

For those that pray:

  • Give thanks for the miracle of Eloise getting this far and defying so many odds so far.
  • Pray for Mel and Pete as they discuss with the oncologist tomorrow whether to give Eloise future intrathecal chemo via a lumbar puncture or directly into her rickham reservoir (this might be a tricky discussion).  Pray for wisdom for all involved.
  • Pray for Eloise’s energy to increase and for the side effects of her treatment to be limited.  Pray she gets stronger and stronger (she’s still a long way off ‘normal’).  Pray that the absences and tremors decrease and are just temporary side effects and nothing more serious.
  • Pray for the chemo to completely obliterate any remaining cancer cells and for her to remain NED.
  • Pray for Pete and Mel (and extended family) as we wait for her next MRI on Monday 1st November.  Pray for the scan to show that she is still NED.

Why life is different (in no particular order):

  • It’s waking up in the morning to Eloise requiring a whole change of clothes and bedding because her feed has been on overnight (resulting in full nappies, or sometimes the feed leaks) or she continues to have a dodgy tummy due to the chemo.
  • It’s realising Eloise has pulled off her dressing from her hickman line during the night.  Fortunately the line hasn’t been pulled and just requires us to re-do the dressing. (Pulling it requires immediate emergency care/clamping from us and a rush to the hospital)
  • It’s making up her medication and chemotherapy that she takes at least twice a day  – this is varying but is normally approx. 6 medications/chemo drugs. For one of these meds it involves dissolving tablets into 10ml of water and then only giving 9ml.   For one of the chemo drugs it involves dissolving the tablets, mixing them with oil, whilst wearing PPE and ensuring that everything is carefully disposed of in big yellow bags for incineration.
    To give the meds and chemo to her down her NG tube, we have to draw back from her stomach and test it to check the NG tube is in her stomach and not her lungs. 
  • It’s giving her the medication down the NG tube and a flush afterwards…  And it’s Eloise understanding all of this, including all the terminology.
  • It’s working out the risks of one of us seeing someone that day with a cold – and the risks of bringing a cold into the household, which Eloise could get…

    For Eloise, a cold isn’t just a cold.  She’s not allowed calpol (every parents’ normal go-to for teething, snotty nose/anything!  She’s not allowed it as it masks a temperature).  If Eloise’s temperature reaches 38 degrees she has to go to the hospital ward immediately and most likely start IV antibiotics within an hour.  A temperature is most likely to equal a few nights in an isolated room in the local hospital…not ours/Eloise’s idea of fun.
  • It’s having boxes and boxes of medical equipment, feed, pumps, emergency medical care, yellow bags and boxes piled up in numerous cupboards – and organising the logistics for them to be delivered and collected.
  • It’s managing Eloise’s exhaustion levels and sensory overload.  She’s determined to soldier on and doesn’t complain, but constantly needs a few minutes rest and to be ‘managed’ e.g. she still struggles with car journeys (the Occupational Therapist has been brilliant with helping with this!).
  • It’s having a toddler with an extreme pain threshold because she’s so used to medical procedures, that she hardly flinches when she has an injection in her leg (and your 5 year old asks why her sister doesn’t cry for injections but she does!).
  • It’s having community nurses come to our house at least once a week to do blood tests, Covid tests, tests for levels of various things, change hickman line bungs, change NG tube stickers (this is actually quite stressful as Eloise needs to stay perfectly still, as we don’t want to have to put the tube back down).  And you also always hope the hickman line isn’t blocked or infected as that’s another hospital admission that day.  And a pulled hickman line = a small operation to have it replaced. 
  • It’s spending any ‘nap time’ phoning to re-organise the timings of blood tests because they now need to be done earlier/before meds/in advance of a treatment, organising the many appointments and following up on pharmacy deliveries (before you run out of meds).
  • It’s not knowing how to answer the question ‘How’s Eloise? Is the treatment doing what it’s meant to?’…knowing we haven’t had an MRI for several months, and that Eloise is currently entering the ‘average time for relapse after surgery’. 
  • It’s thinking about the future – knowing Eloise has received the best available treatment to tackle the cancer and give her the greatest chance of surviving, but also knowing that it comes with big long-term likely side effects, that will likely impact on so many areas of her life and education e.g. Proton unfortunately reduces the processing speed of the brain. 
    It’s desperately praying in faith for as limited side effects as possible.
  • It’s attending her numerous appointments each week – either in person in hospital, or at home, or on the phone.  Appointments to discuss either her endocrine system (which has been completely messed up from both the tumour and the high-dose chemo), her seizures/numerous anti-seizure meds, her shunt/any signs of hydrocephalus returning, her eyes/opthalmology (impacted due to location of tumour and surgery), her hearing (at risk due to high-dose chemotherapy), her sensory processing challenges, her swallow, her diet/eating/feed – the list of things to monitor and specialists keeps going 😊  It’s knowing that Eloise will be under the care of  these specialists for years and years to come – and some for her whole life.  The brain is just so complex…
  • Its having your 5 year old ask you how the tumour in her sister’s head got there, what will happen if the tumour comes back, getting upset at the thought of Eloise being in hospital for a night – and expressing that it’s not fair that Eloise has this.
  • It’s making “new” friends in the ‘child brain-tumour and cancer world’ who are going through such turmoil.  You enter a world of paediatric oncology where other families are going through such challenging times and you feel for them – knowing what much of it is like.
  • It’s thinking about some of the trauma and torment of the past few months .  Small or benign things can trigger the trauma e.g. one song reminds you of a particular moment, something on TV reminds you that you live in the world of hospitals.  You are grateful for where Eloise is– but know that life will never be the same again.
  • It’s feeling positive because Eloise has come from having a ridiculously low chance of survival (10-20%) to having a ‘possible chance’ (possibly 60 or even 70% chance of surviving – but to be honest they don’t know as there are hardly any survivors of ETMRs)….but very much aware that she’s not out of the woods yet and that things can change in an instant.  And let’s be honest, the new odds are still not great  – they are only good in relative terms.  And its unfortunately knowing that she’s at a much higher risk of secondary cancer/another brain tumour in years to come due to her treatment.
  • It’s constantly watching her and never knowing if something is a symptom of something bigger…e.g. tremors, ‘absences moments’ etc but staying positive for now, because you just have to get through the day.
  • It’s deciding to have friends over for dinner, with Eloise starting a mild temp and it being 37.8…but holding out in the hope that it won’t reach 38 and you can carry on our dinner (this happened on Friday night, and it fortunately didn’t quite hit 38!).
  • It’s waiting for her to fall asleep at night so you can prepare, draw back and put on her NG feed.  It’s being the night-ninja to set the machine going so she doesn’t wake up….and then waiting to go to bed until the feed has finished, so you can stop it and give her a flush.  And sometimes you fail and you are all awake in the middle of the night…
  • It’s counting calories, desperately wanting and encouraging her to eat anything – particularly high-calorie things so she’s less reliant on her NG tube, as you hope that maybe one day next year she will be able to live without it.  So cake, chocolate, cream, cheese are all things we try to entice her to eat (not a normal parent thing to do!).  It’s knowing your daughter weighed more at 18 months than she does at 28 months.
  • It’s continuing to live in half-Covid-type-times to avoid infection (so no playgroups/toddler groups or nursery and limited playdates)…because no matter how much you love your friends and family, another hospital stay isn’t worth it (and any infection unfortunately could lead to more-serious complications).
  • It’s deciding whether to give Eloise another General Anaesethetic (she must have had over 60 already!) to give her a lumbar puncture or alternatively, decide to pin her down to stick a large needle into her head to give the next chemo direct into her brain (via her rickham reservoir in her brain)…this is tomorrows discussion with our oncologist.
  • It’s being so used to having to get your toddler to be nil-by-mouth, that you know the drill – but it doesn’t make it much easier (just a little easier because she understands what it means to have a ‘magic sleep’).  It’s seeing and leaving your child under GA again (which is still odd) and for her to wake up to different nurses and staff each time (you aren’t allowed to be with them).
  • It’s going back into the same room where horrid moments previously happened and the memories flood back of the torment – but facing them with a brave face.
  • It’s having Eloise ask you ‘You sad mummy?’  Why?’ and just giving her an answer that is truthful but not upsetting for her.
  • It’s being immensely proud of your daughter – genuinely we couldn’t be prouder of the brave, kind, caring girl she is.  But also knowing that so much of her normal development has been stunted for the past year – and that’s so unfair on her.  It’s so sad that she has to just keep on fighting.
  • It’s not having respite because even if you manage to leave Eloise for an hour or so, you need to be constantly watching your phone and be only a few moments away in case there is a problem (eg NG feed machine not working, issue with hickman or anything more serious).
  • It’s not being able to teach your 2 year old ‘normal life-skills’ e.g. to get dressed (as this has to be done carefully due to her NG tube and hickman line), to be potty trained etc.  It’s having very restrained baths to avoid getting these lines wet, and the girls needing to bath separately so any chemo on Eloise doesn’t go onto Anna.
  • It’s always hoping that your girl will defy the odds and make-it – but never knowing.
  • It’s trying to make ‘small chat” with others (trying to fit in/be polite) but at the same time feeling like a lot of the conversation is very trivial.
  • It’s being grateful that her hair is growing back, but missing her bright blonde locks (that she never even had a proper haircut from!).
  • It’s feeling you have to be positive about the future with others and that you can’t admit ‘that it’s not a given that your daughter will make it’.  It’s knowing the future is very unclear, and there are many possible ways that the next few years could pan out (and bluntly none of them are easy – and some of them quite horrific).  It’s planning with different scenarios in mind (because you have to make practical hard decisions about work, life etc) whilst being hopeful and full of faith too.  It’s living in the very-real tension that God is the God of the miraculous and that He has brought Eloise this far, but that we live in a world where sickness and injustices happen – and so we keep praying, praising, hoping and holding on to the God that has brought Eloise this far.
  • It’s loving your daughters like parents across the globe do – but knowing that you are just on a slightly different and parallel road.

Give thanks – Superstar Eloise and Round 3 tomorrow

Eloise is the best she has been in 2021!  Her language is coming on, her character is coming out and she’s getting physically stronger.  She’s a very sweet girl, with a great sense of humour, and is very much an extrovert that assumes everyone will want to play with her. Her smile and laughter are returning.

Eloise has loved having Kobe, has been enjoying some playdates, has been to the beach with Nanna V and Grandpa Ross and has even been to an outside toddler group (Toddler Time at Rydes Hill School, who have been wonderful to ensure the group meets outside and also highlight to parents that Eloise is coming and needs to avoid children who are ill/have a cold.  We have been so blessed by this and feel utterly humbled by their kindness!). 

It has been so special to see Eloise do ‘normal things’ and we are grateful to so many people who go above and beyond to bring a bit of joy and normality for our girl.  It feels like after a year of torment, we are finally getting some of our determined, sprightly young girl back. And her hair is starting to grow back too – including in the 3 proton ring areas where the 3 proton beams went in.

None of this was a given.  Even her hair re-growth – the proton oncologist specifically asked the physicists to work on the beams again at the last minute in order for there to be 3 beams and not 2 – for the sole purpose of trying to increase the chances of Eloise’s hair re-growth in those areas. 

Intrathecal chemo tomorrow

Tomorrow morning Eloise will have her 3rd Intrathecal Chemo at the Royal Marsden – via a lumbar puncture under General Anaesethic.  They will also test for a few other things via the lumbar puncture.  She will be nil by mouth again and will most likely be poorly and weak for a few days.

How do we feel?

  • Grateful, and at times even emotional, seeing our girl do ‘normal’ things and enjoy life.  Despite the trauma and pain, it feels like it’s made the last few months of horrendous decisions and treatment worthwhile – to just see Eloise start to shine again.  But we know that we are in a minority for ETMR parents and feel so blessed.
  • So proud of our girls.  They really are fantastic and are both really starting to actually enjoy life more. 
  • Anxious about whether Eloise’s outward strength and improvement reflects the inward.  Unfortunately we know that appearances don’t necessarily reflect what’s really happening with regards to the cancer reappearing (in the same place, or in other places in the brain/spine).  Eloise’s next MRI is on 1st November, which will actually be nearer 4 months from her last one…..that’s a very long time when ETMRs are so aggressive and deadly.
  • Still feeling like we live on a completely different planet to most people!  This specific blog post doesn’t outline some of the reality and ‘other side of our life’ of living with a toddler fighting brain cancer – but for now we celebrate where Eloise is (knowing that tomorrows chemo will also set her back a bit and make her poorly!).  And if you ever want to ask us about what its really like (more than we write in this blog) – do just ask….it really is a parallel universe some of the time!  Challenges we didn’t even know were challenges, are daily challenges.

For those that pray

  • Give thanks that Eloise is becoming more of herself again – actually doing ‘toddler things’, playing and not just surviving.  Give thanks that we are seeing her smile – especially as so many of you have prayed for this.
  • Pray for the intrathecal chemo tomorrow – pray for the GA and procedure, for no infections, temperature spikes, unexpected side effects and for her to tolerate it well.  Pray it obliterates any remaining cancer cells.
  • Pray for Pete and Mel as we have another month running up-to her next MRI.  Pray we can be peaceful despite any underlying anxieties and fear.
  • Pray for protection for Eloise!  Pray for her to defy the ETMR odds and to remain with No Evidence for Disease for years to come. Pray she lives up to her name  and continues to ‘fight for life in all its fullness for herself and many others!’

Celebrating the good days – with a new addition to the family

There have been many, many hard days during this brain cancer journey – but the last couple of weeks we have had more fun, a few more smiles and much more ‘play’ than we’ve had for a long time.  So we are celebrating and grateful for the good days.

Eloise seems to be tolerating this round of chemo well.  Her appetite is still very low, and we spend much of the day trying to get her to eat/nibble at something – but she’s doing ok otherwise (and still has her NG feed).  She still gets tired and is lethargic, but she’s content and generally enjoying her days.  And we are getting better at being aware of, and managing, her sensory issues.  So we are very grateful for that.  Eloise has such a sweet and kind nature – it’s really lovely to see.

A local charity called Momentum has been wonderful to us and has provided us with some ‘music therapy’ sessions for Eloise.  These are at home, so are safe for her to do from an infection point of view, and Anna is able to join as we do them after she gets back from school.  Having had so many things ‘taken away’ from us due to this cancer, it is so nice to have something positive.  We are so grateful.

Anna is ‘loving school’ in her own words.  She really does seem to suddenly be thriving.  She’s fanatical about her new swimming lessons – and it feels like life might be resembling a normal-ish childhood upbringing for her.

And so the big news….we have bought a lovely dog!  If you’ve been following this blog you will know that Eloise is dog mad (Anna and we all are too really…!).  We’ve spent many days in the past few months going to parks so Eloise can say hello to dogs – it’s one of the few things she can do.  So we decided to take the plunge and get a dog. 

So Kobe has joined our family and has brought the biggest amount of smiles!  He’s 11 months – exceptionally gentle and calm, brilliant with our girls, and is quite simply amazing – we bought him from a lovely family who we are very grateful to.  And Eloise and Anna adore him already and can’t believe how calm and gentle he is. 

It might seem mad to add more complication into our lives, but he really is giving Eloise confidence and fun.  Pete heard Eloise laughing yesterday as she was playing with Kobe, and feeding him his dinner – we have hardly heard her laugh since her surgery in March.  He really is bringing dog therapy…and we might officially train him in dog therapy in due course.

And for us, there’s a chance now, that Anna will remember 2021 as not only the year of Eloise being unwell and living in Covid times…but the year we got our fantastic Kobe.

How do we feel?

As you will see from the above, we feel really grateful for all the things we are blessed with.   Grateful for moments of joy and smiles, and grateful for a wonderful dog who is bringing happiness to the girls.

Enjoying the present.  We’ve had no unexpected hospital trips and are enjoying being at home all together.  We don’t take any of this for granted any more…

For those that pray:

  • Give thanks that Eloise is here with us (the average life expectancy for an ETMR patient is 9-12 months from diagnosis, so Eloise is starting to already exceed that!). She doesn’t appear to be having any seizures and is tolerating this chemo round well. 
  • Give thanks that Eloise is content and for the gift of having Kobe!  We continue to pray for Eloise to live up to her name and ‘fight for life in all its fullness’.  Pray Kobe continues to help bring out her confidence, smile and laughter.
  • Pray for Eloise’s appetite to increase so she has more energy and doesn’t rely on the NG feeds so much.
  • Pray for Eloise’s next round of chemo – that she tolerates it well and that it kills any cancer cells.
  • Pray Eloise remains NED.  Unfortunately it feels very binary – she needs to stay NED as there are very few treatment options if the cancer returns and the chances are high for the next 18 months-2years.  Please don’t give up praying.
  • Pray for other children affected by cancer, including many of our friends. September is childhood cancer awareness month. Cancer continues to be the leading cause of death for children after accidents – and of these brain cancer is the biggest killer. The diagnosis is devastating, the treatment is brutal, and the majorty have long term side-effects for the rest of their life.

Round #2 – How is Eloise doing?

When people ask, ‘how’s Eloise doing?’ I never quite know what to say. She’s relatively ‘well’ but then I take a step back and think ‘heck no, she’s not doing well for a 2 year old?!’. It’s really hard to know what to expect, what is now seen as ‘well’ (because she is not a well child!) and each day is different.

So here are some thoughts on how she is doing at the moment…

  • Eloise had her second intrathecal chemotherapy on Thursday. It went smoothly and this time her temperature started to creep up but didn’t spike. Phew! So we have been allowed home. So she is ‘well’ as she’s not in hospital on IV antibiotics etc.
  • She’s well in terms of getting steadier and stronger on her feet, but she can’t run and bounce like a normal 2 year old and her head is titled down. She really has lost a lot of her ‘bounce’ over the last 9 months and it feels like most days she just puts all her energy into getting through the day and participating in things as best she can. She interacts and walks around and will then just lie down and rest on the floor, or get agitated as she’s very suddenly overtired.
  • She’s well in terms of her language developing, but a lot of the time she hasn’t got the energy to ‘chat chat chat’. Her humour comes out occasionally on a very good day, but we do miss her infectious smile and laughter (she genuinely was the most smiley of kids) that she had pre-treatment. It’s slowly returning, on her better days, but most days she’s still clearly feeling quite whacked, nauseous and poorly.
  • She’s well in that her weight is more stable, but her appetite is particularly low. She’s nibbling at best. We know it’s not just being fussy as she’s often refusing anything. This can be quite exhausting trying to encourage her to eat… We give her an NG feed overnight, but that involves waking in the night to man it, turn it off and give it a flush…. And it isn’t really how you want a 2 year old to live.
  • She’s well as she’s not vomiting, but she does have a lot of lot of nappy, clothes and bedding changes. Despite her being mentally ready, potty training is a long way off at the moment.
  • She’s well in that she doesn’t appear to have any of her focal seizures, but does have some absent moments when exhausted, and she’s on such high anti-epileptic drugs that add to her exhaustion.

Thanks to those that prayed for Anna – she has really enjoyed her first week back and been brilliant with all the uncertainty and change.

For those that pray:

  • Pray for this round of chemo – for less exhaustion, for her appetite and for her to feel more ‘normal’. Pray for her to smile and laugh more.
  • Give thanks she’s NED. Pray against relapse!!

Maintenance Cycle #2 (of 12)

Tomorrow morning (Wednesday) Eloise will have her second intrathecal topotecan chemo – the start of her 2nd 28 day cycle. It was brought forward by a day so we are now going in tomorrow. We would value prayers for this – prayers against any big and small side effects of the chemo. Last time we ended up in hospital staying longer than the expected 1 night (we stayed 3 nights) as Eloise spiked a temperature after a few hours after the lumbar puncture.

Tomorrows intrathecal chemotherapy also coincides with Anna’s first day in Year 1, so unfortunately Mel and Eloise won’t be at home when Anna goes and returns from school. We are hoping, all being well, that we will be home on Thursday though.

Unfortunately we also ended up having a night in the Royal Surrey last weekend as Eloise had been quite poorly for a while and needed fluids. She seems to be doing a bit better now and we were grateful for Eloise being allowed out to enjoy some of the weekend, including the village dog show (she continues to be dog and cat mad!). Eloise continues to be very tired, but she consistently always gives 100% and tries to participate in everything – even if she then lies down and collapses on the floor during it.

Eloise has also had a few more appointments over the past week, which have generally been encouraging:

  • Eloise had an ophthalmology appointment at St George’s and so far, although Eloise always tilts her head down and her eyes are always looking up, this appears to be from exhaustion rather than from any neuro or optical issues with her eyes. We were told previously to expect issues with her eyes post surgery, but so far, it appears Eloise’s sight and eye alignment is ok. This is a big relief.
  • Eloise also had a really helpful appointment with the OT (occupational therapist) and it was encouraging as Eloise is clearly getting steadier on her feet and physically stronger. She continues to have visual and light sensitivity issues, but we are finding it so helpful to have someone advise and support us in helping Eloise to manage these. Her appetite is still quite low.

How do we feel?

Slightly chaotic – lots of appointments have changed this week and with the unexpected admissions too, it’s been quite a juggling act. Plus Pete has returned to work. But we are doing ok!

Grateful for the outcome of the ophthalmology appointment. Grateful that her first cycle of chemo has been relatively ok.

This week actually marks a year since we first spoke to our GP and went to the Out of Hours service, having had our wonderful childminder and others notice that Eloise might be having seizures. What a rollercoaster of a year.

For those that pray:

Please pray for the intrathecal chemotherapy tomorrow. Pray that Eloise tolerates being nil by mouth, that the procedure is smooth and that there are no big side effects. Pray for protection against seizures, infection, temperature spikes and numerous other chemo side effects. Pray that Eloise is able to come home on Thursday.

Pray for Anna as she starts a new school year (her first reception year being so disrupted). Pray for her as she starts the year, whilst also dealing with Eloise and Mel being in hospital again. She’s looking forward to it and we are so proud of how increasingly courageous, responsible and caring she is.

Give thanks that Eloise seems overall to be doing well – that her last scan was NED, she doesn’t appear to be having seizures (she’s still on very strong anti seizure meds, and will be for many years), that her sight seems to be ok and that she’s getting stronger on her feet. Pray that this all continues and that her energy and appetite improve.