To The Brink (Part 1)

After getting out for the first time in months, this blog takes us through our return to hospital, the next treatment and the events that take place following that in November. This one was a real rollercoaster for us as you’ll soon find out.

Settling Back In

It’s Monday 2nd November and Mummy and Louis are back in hospital with Daddy home with Isabelle this week. We nearly didn’t make it mind. As we unpack the car in a busy hospital lay-by, Mummy walks off with not just Louis and enough stuff to last the week – but the car keys. As Daddy goes to drive off, he realises that the keys are missing and that he would be lucky to get 50 metres down the narrow one-way road to exit the hospital before the car cuts out. Mummy comes back down and off we go with an empty feeling on the cold, grey November day - but hopeful that this won’t be last time little man gets home.

Louis gets back in the swing of things by refusing to take his clothes off for bedtime and has to be stripped in his sleep. He’ll be nil by mouth on Tuesday morning as he will go under for his intrathecal / lumbar puncture before being hit by the first big chemo drug of this fifth cycle.

Come Tuesday evening, Louis has a cold, covered in snot and been through two outfits. Not very compliant with 'obs' either but at least no temperature yet.

More Covid Scares

Isabelle was given permission to skip school on Monday given it was the first time Louis had got home in months and the limited time we had. So far, we have had Mummy in isolation and Isabelle having a negative test. Our next flirtation with Covid comes in the form of one of Isabelle’s class mates having Covid in the family and needing a test – the risk being that her friend tests positive and Isabelle and Daddy being served with a 14 day isolation period. Fortunately the test is negative, Daddy and Isabelle avoid isolation and Mummy avoids the extended stint in hospital.

Meanwhile, Back At The Ranch

This fifth cycle isn’t going to be fun. Whilst less toxic than the first three, this one requires two 3-hour bags of chemo during the day and a 12-hour bag of chemo every night for a five days. One of the chemicals will lead to Louis needing eyedrops during the treatment and 10 days after to prevent conjunctivitis. He gets these at 2-hour intervals during the day and every 4 hours at night. I’m not sure if you’ve tried giving eyedrops to kids – but there are definitely better, more fun-filled activities to do as a family.

Still, Louis and Mummy are having a bit of fun. He has been drinking good volumes of fluid and has eaten a bread roll. They then play “giddy up”, with Louis pretending Mummy is a horse….until he gets over-excited, bashes his nose on Mummy’s cheek and throws up all over her hair, neck and down her back.

A few days in and Louis is really sleepy, feels sick and having his feeds halved. The chemo is pretty much on tap the whole time. The next cycle will be the same and given where we are in the year, we figure that he will probably have chemo the week before his birthday (14th December) and therefore feel rough for his birthday as the week after chemo tends to be the worst. He may even get chemo during his birthday week should he have a week delay - always a possibility in this game. Louis starts to see temperature spikes – but this is an expected side effect of this particular chemo cycle and not necessarily infection.

Another Covid Scare

In the meantime, Daddy has been working at home but because he had a bit of a cough, he goes to a Covid testing site and into isolation until the test comes back. This one takes 72 hours and means the handover takes place on Sunday this time.

Here’s a curveball though.....on Saturday, it’s suggested that Louis might get out on the Monday and Daddy only be in a day (bonus)!!! After the drama of the last cycle and nearly not making it home on the lighter treatment, we may get out…almost immediately (could this really happen)? It is confirmed that as long as Louis maintains a decent temperature and tolerates his feed, this is real.

Home Coming?

So it’s Sunday, the handover is complete. We are working through the logistics of getting out on the Monday. You know what happens next don't you? Come Monday at 08:30 am, Louis is 38.2 degrees and was being served Calpol in the early hours – so no escape today. He’s also got a bit blotchy and the home coming looks like it won’t be until Wednesday or Thursday now.

The next few days are pretty painful. Louis is constantly sick – usually triggered when he has a really minor disagreement with Daddy / a nurse or after the anti-sickness medicine. Louis pushes Daddy to the brink a few times but whilst it’s easy for us to complain, we have remind ourselves that if it’s much more difficult for him, constantly being poked, prodded, inspected, feeling sick, being sick, often having a temperature. In the meantime, preparations are started to stock up on medicine and feed for Louis in the event he gets out – it’s beginning to feel real that we may get out again. It’s during this week that we get news that Mummy’s Uncle Ali has got Covid and in hospital and there is talk about placing him into induced coma, so bitter-sweet feeling all around.

It’s Wednesday 11th – we’re gonna get home…epic right? No….at the moment, it’s anything but epic. Louis has been raging all morning and every time Daddy moves, Louis flies into a rage. Daddy attempts to have a shower and the rage starts as soon as the water hits him. Daddy is worried he’s going to start being sick and that this will prevent us getting out so stays in the room the whole day, not even daring to get food for fear of rage and vomit. Louis decides he wants to get dressed, to wear his coat and be placed into the pram despite being told he would need a 3 hours blood transfusion before we leave. He doesn’t care. Nor does Daddy – it’s literally taken 4 hours to calm Louis down. Louis spends a few hours slumped in the pram, probably baking hot in his coat.

After a pretty stressful day, Mummy arrives and parks in the lay-by. Daddy performs a series of lung-busting series of trips with the luggage from the top floor of a multi-story building. He returns to the room after the final trip to find Louis has been sick all over himself – and that his spare clothes are in the car (aaaaggghh). He goes back to grab some clothes and cleans Louis and the bed. After placing the dirty linen in the ‘dirty room’, Daddy returns to find that Louis has this time treated himself to a seriously soiled nappy and some leakage over the bed. We finally get on the road at 19:30 only to encounter a closed motorway. We get home at 21:30 but the kicker is that Louis needs a 4-hour feed each night and due to the late getaway, this will go into the early hours. There are still a few more days on the eye drops and the routine dictates these be given at 10pm, 2am and 6am, so proper sleep won’t be returning for a few days at least.

We wake up pretty ruined. Daddy was exhausted from the last few days - but Mummy is probably worse now because she heard Louis in the night and has been up with him for most of it. Still – we are at home. We are together. We have a whole week this time. This is amazing!

A Week In Paradise

Ok, we lie. This is not amazing. The first port of call is anti-biotics and a few other bits at 7am as Louis needs an hour before his first feed. However, Louis throws this straight back up and we have to give it to him again (as we can repeat meds if thrown up within 15 minutes and not absorbed by the body). The regime is quite rigid in terms of feeds, breaks, fluids, meds, etc. and we don’t really want to add delays beyond an hour over the day as it will result in his four hour night feed going to 11pm or even midnight and we need to be awake during his feeds for safety reasons. And we need sleep.

Anyway, Louis continues to be sick throughout the morning and registers a 38.2 temperature spike. When we are home, we get home visits from nurses as standard – but if he becomes ill, we need to go to our local hospital (Worthing). Louis is in Worthing hospital by midday. Within minutes he marks his territory by throwing up on the freshly made bed and before long, he is prescribed a course of antibiotics. Looks like a good five days will be spent in Worthing whilst we rid Louis of whatever this bug is – maybe we get a few days at home before we need to go back to Southampton?

Louis has a temperature of just under 38 degrees and continues to be sick. It takes a disturbing turn when it goes green and remains that way for the foreseeable future. The hospital has been great in finding an isolated room for Louis but there is a challenge in that the TV aerial doesn’t work and nor does the WiFi. This would normally spell disaster when looking after an irritable 2-year old but it’s not too much off an issue as Louis is spending the entire time being sick or sleeping. The rules are a bit different here in Worthing too. In Southampton, I can run down and grab food, coffee, etc. but that’s not the case for me at the moment, although the in-house catering team are very attentive. Another difference is that Mummy is allowed in and out as she pleases, so she brings Daddy a relief package (aka grump-avoidance measures). As the evening approaches, it looks like a few of the meds that Louis has won’t be given to him - quite sensibly on the basis that he can’t hold anything down. The lack of anti-fungal medicine is worrying though – we didn’t think that was negotiable. After a few calls to Southampton it is confirmed Mummy and Daddy were right. Despite the reluctance and embarrassment of challenging, it appears to have been the right call.

Friday the 13th

After an overnight stay, Louis is no better. Should Daddy ever wish to change profession, he can now claim to have a wealth of experience in being a human sick bowl should such a position arise. Around lunchtime, Daddy sees the consultant who originally referred us to Southampton for an MRI. He explains that Worthing has probably done all it can for Louis and that he would be best off back in Southampton. Another worrying symptom that has appeared today is one or two small specks of slimey blood at the front of each nappy – turns out you can get mucositis in your man-parts and that he is probably passing a bit of lining – not sure if it was the lining of the man part or something else but Daddy had to sit down and cross his legs for a few minutes. At 17:00, we board an ambulance. Louis christens it as soon as he gets in there with a little green spew and by 18:30, we’re back in Southampton. Daddy asked if Louis was excited by the trip in an ambulance and you could tell he was – or that he wanted to be, but that he was struggling to muster the energy to enjoy it. You could see a glimmer of excitement as the sirens went on to cut through some traffic towards the end and ensure we got him some much-needed meds – but this was countered by desperation and exhaustion.

As we arrive back, we walk through the corridor to meet a load of concerned faces, mixed with disappointment that we ended up returning in such circumstances. It feels a little like a scene from the film, The Great Escape. This is the scene following a failed escape attempt and the individuals concerned are marched through the camp, with everyone watching intently as they are led to the cooler. I did share this thought with one of the nurses and had to quickly back-track and explain that I didn’t mean to say that the ward was like Stalag Luft and that I was not suggesting they were like the Kommandant or his staff. I think they saw the funny side.

Following an incident when one of the families of the ward were found to have Covid – and probably due to general movements in the mitigation of Covid, we are also put into isolation and not allowed to leave the room. The new rule dictates that all parents have to isolate in their rooms until they have a negative Covid test if they have been away from the hospital as we had. We also wear face masks in our room until the test comes back. At least that’s what we’ve been told – I’m sure being placed in confinement after a failed escape attempt is not a reaction to me having compared them to a PoW camp. A small consolation is that a company called the Eight Foundation have dropped a load of care packages containing a tin of Heroes, some cake and a few other little bits across the hospital as a random act of kindness. The biggest decision Daddy now faces is whether to eat / hide Mummy’s top three favourite Heroes or whether to eat a load and leave the empty wrappers in the tin – one of Mummy’s pet hates. Daddy opts for the latter. He knows he will be getting a call fairly soon after the handover and that this will be mentioned in the first three sentences. Mummy doesn’t disappoint when Saturday eventually comes.

Now that Louis is back, the next few hours are spent wiring him up to various things and having scans to check for issues around his abdomen. The ultrasounds and x-rays taken over the next few days don’t turn up anything of interest, which is great. Louis’ temperature is under control for the moment and the sickness had subsided. The team are however doing the opposite of feeding him through his NG (nose) tub and are ‘aspirating’, that is allowing his gut to empty itself to help prevent him being sick. It seems to be working.

The Handover

The handover from Daddy to Mummy is pretty uneventful this week. Louis hasn’t got much energy but still responsive. The trauma has only really just started for Daddy as Isabelle has decided she wants to do Daddy’s make up, dress him like a unicorn and then treat him like a donkey at the seaside by making him carry her on his back around her room. As she explains this, she does impressions of how she thinks Daddy would sound as a unicorn and finishes off with her trademark cackle that her nursery and school have often referenced during parents evenings when explaining how she lights up the room with her cheeky behaviour and her booming laugh.

As we progress through the week, Louis doesn’t improve. He spends a lot of time sleeping and on the Tuesday is even given an oxygen mask as his oxygen levels are a bit low.

It’s during this worrying period, that Isabelle decides to prank Daddy at home. Daddy unwinds by staying up watching TV – and stays up a little later than he should have and crashes into bed. Only the bed is wet. And there is a wet toilet roll in bed. Daddy doesn’t think this has been down the toilet and it looks like the mattress is safe, discards the toilet roll and gets back in bed – but of course the duvet is wet. He grabs a duvet from upstairs, only to realise it’s a single but he doesn’t care, he’s tired. Turns out it was a child’s single – and summer thickness, resulting in him shivering and waking up multiple times during the night. Daddy kind of deserves this for encouraging his kids to play pranks but decides it’s time to draw some boundaries.

Come Thursday, Louis has a heart rate of 177. The range for a child is 90-150, although his resting heart rate should be around 100. His temperature is high as well and reaches 40 degrees. The testing of the gut remains positive – no issues. They are performing all sorts of tests such as pancreatic function. It looks like this chemo has well and truly wiped him out despite the early positivity that led him to being allowed home.

As we enter Friday and the Saturday handover approaches, Mummy advises Daddy to get some sleep. Louis is rough. Really rough. Whilst flat during the day, he has been up every hour in the night.

In the last blog, we said that we might split the November instalment in two – and given where we are and what’s about to happen, it feels like a sensible approach. This blog will simply be too long if we carry on now - and given the next week will be the most traumatic week of our entire lives so far, we probably have a sizeable word count to add.

We will leave you on Saturday 21st November. Mummy has handed over to Daddy. Louis has a heart rate of around 188 and it has exceeded 200 a few times today (we are told 205 is typically the point you really worry). Whatever is wrong with Louis has been going on a while and we still have no idea what is causing it. But we will.

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Before The Ill-Fated Trip Home

Worthing Hospital

Back In Southampton

Cowpat Hat

Snore-fest

Orchestra