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 1^st 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.