The Beginning of The End?

fixinglouis
Mar 18, 2021
9 min read

It’s a few days before Christmas and we’ve been told to mentally prepare for Louis to be in hospital during the festive period. This blog takes us through the holidays and a fast forward to the end of February.

Driving Home for Christmas?

It’s Monday 21 December and it’s suddenly looking like we may be in hospital at Christmas after all. We are gutted but plan to make it the best it can be. When we were initially facing into this, we had plenty of time to think about accommodation, logistics, whether to order food, etc. Now, we have a few days until Christmas and we have nothing arranged (except we have now ordered a load of food for Christmas and not quite sure what to do with it).

Despite the temperature and sickness on Sunday that prevented his escape from hospital, Louis spends Monday and Tuesday continuing to move around a bit. He’s been having physiotherapy for the last 2 weeks to get him moving again and is gradually building up strength in his legs.

It’s during this time that we have the opportunity to support the Christmas campaign for Cancer Research UK. We’ll post the consolidated view after this blog – but we ended up twice on BBC Radio Sussex and in Brighton Argus as well as being in the Worthing Herald and on Meridian TV.

We get to the end of Wednesday 23rd and completely out of the blue we get the news that Louis is coming home – and not just for a few hours, a day or over-night…..he’s coming home permanently. Thankfully the antibiotics that was having through his line were able to be swapped with an oral version so the consultants we happy for him to come home.

Safe to say that this was the best Christmas present we could ever have asked for. Around two hours later, Daddy is at hospital having dropped Isabelle off at her grandparent’s house, which is 15 minutes from the hospital. It’s a little before 7pm and after multiple trips between the ward and car to pack up what has been home for so long, Mummy and Daddy escort Louis off the ward. An ever-defiant Louis insists on walking out, so it takes a while to perform his victory lap. Having diverted for a drive-thru, we arrive at the house of Nana and Pops. It’s a very emotional re-union – especially for Nana and Pops, who have not seen Louis for 6 months. It’s a bit late by the time we get home, so we get Louis his final meds for the day and get him wired up to his evening feed. The timing has been great – our first full day at home will be Christmas Eve.

Christmas eve is spent doing some food prep, getting the stockings sorted and the remaining presents by the tree. Louis and Isabelle get to see Santa and the elves via zoom at the courtesy of PB's own Santa, Claire the Medical Role play specialist who had built quite a bond with Louis. Never a clean sheet in the house when these two got together with the paint and slime!

When we say that Louis and Isabelle had a mountain of presents, we can say this quite literally – we were overwhelmed by the kindness of friends, family and many others that spoiled our children. It literally took hours to open all the gifts. We were also pleasantly surprised to see that the story of Louis getting home for Christmas was the main online story in the Brighton Argus on Christmas Day, which was followed up with a front-page article after the Christmas break. We had an amazing meal, lots of video and phone calls and there may have been a few drinks for the adults.

Settling Back In

So we’re home now – but should Louis get an infection, we would have to return to hospital should he need antibiotics and monitoring. There is of course the risk of relapse, which scares the hell out of us. The highest chance of this happening is the first 11 months. If we get to the 2-year mark, the odds of survival will increase to 95% - and of course we can then set our sights on the 5 year milestone.

The home care regime gets a bit of getting used to. He has his NG tube, which enables us to administer drugs, food and water through his nose to his stomach, which supplements any solid food he may start to have. We write this blog at the end of February and have just stopped his last remaining drug, which was to support his liver. We have a few more weeks of NG feeds at night and then it looks like we may be done.

When we get home back in December, we have a regime that has to start by 7am latest. This is driven by the fact he needs some drugs an hour before breakfast – and the regime is largely planned around these drugs. Any delays in the regime will result in his final NG feed finishing after midnight (which we end up doing a few times) as we’re not allowed to sleep when he’s on a feed due to safety reasons.

On a daily basis, Louis has 3 NG feeds (plus a night feed) and 2-3 doses of water via NG. We need to administer around 10 doses of various drugs each day, also via his NG. The administration of drugs is relatively simple in that you aspirate first, which is using a syringe to collect a stomach sample and test it’s acidity to reaffirm that the tube is still in the right place. Once you administer everything, you flush the tube with water and if needed, connect him to a feed for 30-60 minutes. The routine of 3 feeds and the 10 drug doses generally finishes at 7pm – and then we have to put him on a final feed for 3-4 hours whilst he sleeps (and before we go to bed).

A Period of Adjusting

The thought of complaining about anything these days leaves us with a pang of guilt – and we are of course very grateful to have Louis home….but there are a few other side effects of his stay in hospital, which start to take their toll. Firstly, Louis is used to waking every 1-4 hours for obs, being in a room with light leaking into it, machines beeping and an adult within a few metres 24/7 for the last six months. This means that Louis has a disturbed sleep pattern and is waking every 2 to 4 hours in a dark room without a grown up - and he won’t go back to sleep without an adult by his side (and he has been demanding it be his Mum). It takes until the end of January for this to settle down (he now wakes us at some point between 0530 and 0700). It was essentially akin to having a newborn and it meant we were walking around like zombies – probably quite scary zombies given our patience was worn so thin.

As you would expect, we also have some behavioural challenges. Louis was quite rightly waited on hand-and-foot and got everything he needed with a sense of urgency if it meant a moment of happiness, reduced stress or an opportunity to get calories into him. Louis isn’t pleased to hear that he doesn’t get 5-star service in the real world. He has become very demanding and expects a lead time of 1-5 seconds for pretty much anything he asks for – and when he doesn’t, best case is he repeats the request (multiple times, every few seconds for what feels like infinity…is infinity). Worst case, we feel the wrath in the form of an extreme tantrum – the kind you see on the Super Nanny programme – outbursts of extreme rage that are even worse than those seen when Mummy sees the toilet seat left up or a coat left on a sofa.

We’ve always been pretty lucky with Isabelle and Louis – they settled into a good sleep routine 8-10 weeks from birth and have always been pretty well-behaved (at least when around other people). Suddenly, we have this extreme regression – and of course we want to give a bit of slack to Louis as he settles in – but not so much that it rubs off on Isabelle or makes her feel like he gets away with a lot and that she doesn’t. It has gone this way a little – but as we approach the end of February, it’s a lot better – the biggest challenge is Louis’s lack of ability to share toys, which is pretty normal and we will no doubt overcome.

Also, we speak about the ease of administering drugs and feeds – what is less easy is encouraging a 3-year old to stay in one place whilst the NG machine is on. It can be carried around but inevitably leads to air bubbles (as he decides to drop it or turn it upside down) – and the intermittent catching of the NG tube on objects or getting the plasters wet, which leads to the NG tube coming out and either needing a community nurse to come out – or a trip to the hospital to get a new one. This happened twice in one day a few weeks back.

Where Are We Today?

As mentioned above, we write this at the end of February.

Louis has gone from not being able to walk to sprinting around the house like there is no tomorrow. As he has been finding his feet however, he has also increased the frequency of falling over and hitting his head or face on something – every time causing us angst given where his cancer was.
His hair is growing back – it’s a mousey brown colour at the moment – we have no idea if his shaggy surf dude / Boris hair will re-appear.
Louis might be impatient at times – but he is pretty well-behaved again now and he’s going through a phase of telling us all how much he loves us, which offsets the cheeky and sometimes bad behaviour.
We stopped his last drug on 26th February.
We are weening him off his 3-hour NG feed over the course of the next 2 weeks (ending mid-March). To support this transition, he has been given 300 calorie milkshakes to drink twice a day on top of meals – which he has three times a day on top of snacks (maybe not all as healthy as we want yet – but we will get there).
He frequently catches the NG tube on something – or loosens the plaster that holds it in place. Turns out that Daddy could probably get a few belts in Brazilian Ju Jitsu and wrestling because each time this happens, we need to restrain him, remove the plaster using adhesive remover and replace the plaster – all without the NG slipping out.
Given the drugs and NG feeds have nearly stopped, the removal of his NG tube may be in sight. He has been holding 15KG in weight for over a month – but we have been told he needs to increase his weight before the tube is removed once-and-for-all.

All things considered, life is back to normal (if you exclude Covid). Louis is his cheeky self and with Isabelle, fills our house with laughter....but we do of course hold that fear in the back of our minds that Louis could relapse. He has had a few instances of tummy ache and a few times when he has got something in his eye, which leads to a momentary panic that his tummy issues or cancer has come back.

Some Medical Updates

For the foreseeable future, we will be returning to hospital every 2-3 months for scans – and we’ll need ophthalmology to see if we can recover any of his eyesight in the right eye – and what damage there may be to his left.

We had our first scans back on December 28th and we are glad to report that Louis was cancer free. This was a key date for us as it meant he’d not had a treatment for nearly 2 months and the infection in his head following the PICU trip had cleared, meaning we could get a scan without the inflammation.

We have a number of scans on the 12th of March, which will be followed up with another consultation and we will of course share the news with you all once we know where we stand.

Louis will have low autoimmunity for the 6 months after treatment – at which point he needs all of his jabs again. This will hopefully enable Louis to go back to nursery to see his friends and to help support him in building his social and behavioural skills. His nursery have been amazing and so supportive throughout his whole journey. Raising money for the charities supporting us, keeping in touch with face time calls so he can see his friends and show them all his toys.

The Blog

So the blog probably hasn’t reached its natural conclusion just yet. Given we’ve completed the chemo and now approaching the end of home care, we will have less updates. We will however keep you all updated on the scans and another other relevant news.

We do still of course have a number of fund-raisers pending and we will post updates and ask for support as and when these arise. We plan to write a long overdue thank you to all of those that have raised funds for the amazing organisations that continue to support Louis and our family – and the other families that go through this.

We do just want to thank you all for your support through this very dark period in our lives – and like everyone else, look forward to lockdown being lifted – and for any shielding requirements to disappear for Louis.

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Last Moments In Hospital