The Aftermath

We pick the story up at the end of November, having just experienced the most traumatic week so far. Louis is awake following five days of sedation and a few trips to theatre and it is now time to focus on recovery and to determine next steps in terms of treatment.

Bye, Bye PICU

Louis continues to improve step-by-step with anti-biotics and numerous other infusions. His gut and bladder are working as they should and on 29th November, Louis is able to leave PICU and go back up to Piam Brown Ward. The PICU team have been incredible, we are very thankful for all they did looking after Louis and us.

Mummy goes home on the 30th and the weekly routine returns. Louis has been missed on Piam Brown and gets a warm welcome from everyone. We even get some smiles from Louis. These smiles continue as Louis has had some dinosaur eggs bought for him – tiny toy dinosaurs set in clay, which he softens with water and then opens with a plastic chisel and cleans with a little brush.

As the next few days progress, Louis is still nil by mouth and has frequent visits from PICU consultants to check his recovery remains on track. His voice becomes less husky and the personality begins to shine again. The play team bring him some playdough and a new book that involves a certain type of rude noise brings the giggle back.

Looking Forward

Given we are in the first week of December, talk starts to shift to other important topics – Louis has a birthday coming up on 14th December and then it’s Christmas. Everyone is exchanging wish lists and we all start to do the maths on whether Louis could get out. He clearly needs more recovery time – but if it were 1 or 2 weeks (we have no idea at this point), then maybe he could get treatment on his birthday week or the week after – and potentially be out for Christmas. Maybe.

Images of everyone decorating their houses start to flood Whatsapp and social media and the tree goes up in the Knight household. The usual discussion on fresh vs. artificial takes place and we opt for fresh. Daddy recalls the first time Mummy and Daddy bought a fresh tree together (before the kids arrived) and how it took many, many hours. Daddy took Mummy to select a tree from a woodland area (a legit one). Mummy, wanted a fully symmetrical tree and Daddy literally held up around 500 trees for inspection and put them back for various (usually minor) imperfections. After a few hours, we return to the first tree and buy it. Safe to say Daddy is pleased he’s not around this time but Mummy and Isabelle actually did a good job this year and was bought in record time!.

Daddy also decides that whilst the ward is looking festive too, that he will invest in a tree for the room.

It’s been quite a few weeks since Louis last ate solids. On 8th December, he takes his first taste of breakfast – and on the same day, Daddy builds the tree in his room and transforms the room into a Christmas disco.

The Start of the End?

The main thing that has been playing on our mind over the last 2 weeks is what is going to happen treatment-wise and whether there is a chance of getting Louis home for Christmas. On 9th December, the position is made clear. Our consultant has been in dialogue with the lead expert, who runs the study of NHL cancer in Europe. They have never seen anyone in the study have such an adverse reaction to the treatment and for that reason, two options were put on the table. As you would expect, one was to stop treatment and one was to carry on. If we carry on, we will be rolling the dice on Louis’s life – the risk of death is high. If this was a clinical trial, the level of toxicity seen in Louis would have led them to stop treatment immediately. Also, he has suffered from multiple drug resistant infections, which means it’s harder to treat him if he was to get so poorly again. In terms of carrying on, several options were reviewed in terms of reducing chemical concentration and supporting him to increase his immunity. Unfortunately, the reduced chemo levels would have caused his treatment to be ineffective and there was only a partial solution to the immunity – it would not have worked. Essentially, if we opted for treatment, we would not have been able to mitigate the risk and we really would be gambling with his life.

What voided the ‘continue’ option completely was the fact that his treatment needs to be carried out with a high intensity, i.e. limited room for delays. He wouldn’t be fit for chemo for a few weeks yet (if at all) and therefore we have passed the point where the remaining treatment would be effective. We are told that if the cancer was going to come back, the final treatments probably wouldn’t make a difference – they would just delay the inevitable.

Some Positives?

There is some additional context, which could still lead to a positive outcome after all of this. Firstly, Louis may have been over-treated. His protocol was based on him being high risk (Group C) and therefore being given the most aggressive treatment possible. When we started this, we were told that it was inconclusive as to whether he was Group C or a lower risk category (Group B), so treated him on the assumption he was Group C as it was clearly the most prudent approach.

There are a number of indicators that subsequently suggest he could very well be Group B – but we will not know for certain. The doctors look at his MRIs and a number of other indicators to see if they can confirm either way to a higher level of confidence which we should find out over the next week. However, the real test would be another MRI, which was scheduled for the last week December to allow the inflammation caused by one of his infections to the sinuses to disappear.

If he is Group B, we have over-treated and his chance of survival increases to 93%. Additionally, if he is Group C, the treatment may still have done its job – you cannot tell who does and doesn’t need the full cycles (not something we’d pin hope to – but worth knowing). There was an example of a child that was only able to have 2 cycles and they have survived beyond 5 years.

Another positive is that he has been given the most important chemical that makes the biggest difference to his outcome, so again, there is a positive there - but not a big enough positive in isolation of the other factors. The last point worth making is that he has had two MRIs recently – one during his stint in PICU and one during the prior cycle. The scan he had after his prior cycle was described as having removed most of the cancer – but the team are going to look closer to try to confirm if it has actually gone – they didn’t need to scrutinise to that level before as it was for another purpose. The scan after cycle 6 was the one that would tell us whether the treatment was successful or not but we obviously did make it that far.

The scan he had in PICU concluded he was disease free (but there was still inflammation that got in the way of it being 100% certain). But comparing the two scans together showed that even though Louis had not had any treatment for weeks, the tumour had not re-grown which we would have expected if the cancer was as aggressive as they initially thought. Therefore it is possible that he has been in remission longer and therefore the last dose of chemo was his maintenance dose to remove the cancer completely. In short, it looks like we have no choice but to stop treatment as it risks his life and ultimately will not be effective / change the outcome even if we did want to give him his last cycles.

Next Steps

So….next steps are to get updates over the next week and then at the end of year to have an MRI to double check everything and to see whether it could further confirm that Louis may have been Group B.

The consultant also wants to also put Louis through some more tests as his bone marrow is currently under performing. Hopefully it is the temporary effect of the chemo as opposed to a genetic pre-disposition.

If it is the latter, this will be especially important as if he relapses, options are few and far between – but one option is to give him even more intense chemo – so he needs to be ready to face into that.

So for now it’s taking it day by day and helping Louis to recover.

Get Me Out of Here

So we know Louis won’t be out for his birthday, but Christmas is not out of the question. In some respects, it feels like we’re on the home straight as the treatment has ended and this chapter will end. On the other hand, we have stopped the treatment short – and the final treatments are there for a reason. We’re feeling beyond cautious – but maybe the MRIs will help put our minds a bit more at rest. Daddy offers to be chef for the ward on Christmas Day if we’re still there, although we’re not sure if that will be allowed with Covid. It looks like Isabelle and a parent can go to the hospital and drive back the same day – or that there is a place to stay (Ronald MacDonald House – or the CLIC Sargent house down the road). It’s not entirely clear if he will be out completely, whether he will be allowed off the ward for a day or overnight or whether it’s a firm stay on the ward.

Birthday Boy

Leading up to his birthday, Louis is continuing to improve and is even tucking into pizza two days beforehand, which is great as he has a birthday cake too eat – and he needs to be ready to face a Christmas dinner. Mummy and Daddy decide to change the handover from the weekend to Monday 14th December as it’s Louis’ birthday and it means we both get to see him – although sadly Isabelle isn’t able to join due to Covid restrictions.

Sadly Amazon has failed again and the items mummy ordered to decorate Louis’s room don't turn up but the nurses and the play ladies come to the rescue with banners, bunting and posters. So mummy spends the night before decorating his room while he sleeps and putting his round one of presents at the end of the bed so they are there when he wakes up.

Naturally he wakes up early at 6pm and after asking for over an hour to open his presents, at 7pm he gets his wish and the nurses come in to watch him open everything. One of the nurses also does a great job in being the personal photographer/videographer and captures the morning perfectly.

Meanwhile, Daddy packs for the week ahead and delicately balances the dinosaur birthday cake in the footwell, praying to the cake gods that it will arrive on the ward in one piece. En route, a MaccyDees Happy Meal is picked up. It takes a few trips and bit of help to transport the cake, MacDonalds and gifts to the room (on the top floor – and a decent walk from the car park) but eventually the celebrations begin. There is an ocean’s worth of presents in his room and he effortlessly rips them open, gift-after-gift. The nurses serenade Louis with a rendition of Happy Birthday – and he gets to slice and eat the dinosaur cake that he’s been asking Daddy to make for him for all year.

The Home Straight

It’s possible we’re approaching the end of our stay in the hospital - it’s been suggested that Louis will get out on Monday 21st December. Permanently. 18th December marks Daddy’s last night in hospital, at which point he hands over to Mummy – with all of us coming home a few days later. Daddy signs out by cooking a steak, parsnip puree, sprouts and a red wine jus. He hasn’t managed to get out of the late-night hot chocolate from Costa either. A combination of lockdown, week-on/week-off in hospital, gym closures, comfort eating and a bit more indulgence in wine and beer than normal has turned Daddy into a human foie gras. Following Christmas, it’s going to take some effort to shift the timber – but at least we will all be home and able to get into a routine again.

The lead up to Christmas has been a bit surreal. Not knowing whether to buy-in food, go crazy on the house decorations and logistics of how Santa will get presents to the hospital. Or if we are out of hospital who we can and can't see and what we can and can't do.

Louis is in great spirits. He’s got a few advent calendars, we’re getting some good play time in and he’s not suffering from the side effects of treatment. We are seeing a few behavioural issues mind. He’s used to getting what he wants - on tap and immediately. His impatient side is shining through as much as his cheeky side, so there will be some challenges ahead as we gradually reintroduce discipline.

It’s 07:34 on Sunday 20th and we’ve been working towards the 21st – the big day. Daddy gets a WhatsApp from Mum. Louis has a temperature and will not be home tomorrow. We are told to mentally prepare ourselves to stay in hospital over Christmas. Of course we now have food ordered, no accommodation arranged. Isabelle will be allowed on the ward for the day but we will all need to shield from Covid immediately. He’s being sick, which is not related to the fever he has, so the food has been stopped and we will need to build him back up. Blood tests are taken and the next 48 hours will help us to understand our fate.

It didn’t take 48 hours – the cultures grew immediately, meaning there must be a lot of the bug already present. A strong antibiotic is given and if it doesn’t respond in 6-12 hours, his line will be taken out and a canula used instead. Previously, we have seen antibiotics take 2 or 5 days to take action – and then 48 hours is usually required in hospital following a course of treatment. Christmas is very touch-and-go – it’s possible he can come out for the day but be back in Boxing Day. We also investigate whether drug administration could be done locally. He is having some tummy pain, but at least he has stopped being sick.

This feels like a good place to stop. We can leave the will he / won’t he get out for the next blog (even if most of you know what happened next).

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