Business As Usual

fixinglouis
Nov 27, 2020
9 min read

In this blog, we’ll talk about the third cycle. We called it business as usual because it’s similar to the second cycle and given we are writing this three months after the events in this blog took place, we know that there are some character building and new experiences ahead, which are less than usual.

Spoiler Alert

Apologies for another sizable gap between blogs – we are hoping to get back into a rhythm again soon. We’re writing this blog at the end of November - and given this blog is about September, we have a bit of catch up. We have however had a huge drama over the last few weeks, which has seen Louis riddled with infection, taken a trip to the ICU (intensive care) – and at one stage, we were told to prepare for the worst, meaning both Mummy and Daddy have been by Louis’s side for the last week. Probably the worst week of our lives – but we will get to that in a few blogs as there are quite a few ups and downs to go before we get to this very traumatic part of the journey. To put your mind at rest, the life-threatening issue has been resolved for the time being and we hope to leave ICU in a few day's time.

Start of Cycle

Anyway, back to the story. Louis started his third cycle on 1st September and he is now eating again. In fact, he was his challenging self the first few days of the month and on one particular afternoon decided that he did not want the hospital food but pizza – he had of course been offered pizza for dinner and decided against it. Luckily, Daddy can improvise. He goes to the kitchen and the first challenge is pizza bread – Daddy makes some toast but as there are no pastry cutters, uses a mug to cut the toast into pizza bases. The rest is simple – there is some leftover passata and tomato paste in the fridge, one of the parents that left has handed down their oregano – and there is also grated cheese in the fridge and this is grilled and melted. A very smug Daddy walks back to the room to find Louis lying down flat, covered in a layer of sick from neck to belly and rigid to try and stop the sick dripping off him on to the bed – unfortunately his attempts were futile. After a frantic bed change a re-delivery of the pizza, Louis decides he no longer wants pizza. He does at least clean his teeth for the first time in weeks.

After the drama of the bank holiday traffic and the impact to Isabelle’s birthday, we then get the news that the M27 will be closed for several junctions. For those of you not local to Southampton, this road is the main artery for driving along the south coast between Brighton and Southampton. The detour options are pretty dire and result in 3 hour journeys each way. Joy.

It’s Mummy’s turn this week and with the new school year approaching, the ward starts to think about the rules surrounding the onsite facility used for play, nursery, school and childcare. The rules are relaxed slightly, which leads to Louis leaving the room for the first time since arriving 2 months earlier. He gets to use the playroom by himself but is a bit wobbly where he hasn’t used his legs properly in a while. It’s also first time he has been happy to put on clothes and it’s nice to see him with more than a nappy on. He is still nibbling his food despite being a bit sicky – but the chemo will shortly take effect, so this will no doubt go downhill soon.

Back to School

The following day, it’s the first day back at school for Isabelle after summer holiday. The diagnosis happened just after school broke up but we did contact them to ask if there was support for Isabelle. The school have been great with the headteacher responding during summer holiday having looked for literature to help us and also offering to connect us to another set of parents that she knew was going through a comparable situation. Isabelle’s new teacher also reached out before the start of term to say she had bought a book for Isabelle that explains cancer to kids. She has also been very supportive as Mummy and Daddy were worried that other kids may have heard of cancer and would potentially say things that weren’t quite right or that they upset Isabelle – another reason we were very careful how we explained this situation to her. It’s also very possible that Isabelle opens up to her friends and with the school’s support, everyone is now primed to watch out for her.

In the three months that have passed since this blog, we can safely say that Isabelle has had a few wobbles but soldiering on - her effervescence and infectious laugh keeps us all going when we feel a bit down. It tends to be at bedtime that Isabelle says to us how she misses her brother and there have been a few minor incidents at school where she has shown sensitivity or has got upset but her teacher has been all over it and we’re grateful and lucky to have their support.

That Slippery Slope

Back at the hospital, Louis has gone neutropenic. This is the technical term for the white blood cell count plummeting to a level where his autoimmunity has gone along with the ability to fight infection. He is also grinding his teeth again and struggling to keep food and medicine down. We’re back to 2 hourly ‘obs’ and lots of noise during the night, resulting in little sleep for Mummy. The nurses are great and very tuned in to parent moods and wheel in cake and a cup tea. After a few days, the anti-sickness kicks-in and the teeth grinding slows down. Sadly, this is replaced with a few nights of Louis refusing to settle and demanding cuddles on an hourly basis.

Time to Sober Up

It’s coming to the end of Mummy’s shift when something truly dreadful happens. A vicar is seen walking past our room. A little later, everyone is asked to shut their curtains. There is a definite tension in the air. It’s later confirmed that one of the children on the ward have passed away and whilst we didn’t know them very well, it is like being punched in the gut. It reminds you of the harsh reality that people on this ward (including yourselves) are facing into – and it’s very sobering. It’s at times like this that everyone on the ward pulls together. Parents are offered the opportunity to offer their condolences and coffee, sweets and support workers are on-tap. The nurses and consultants soldier-on, but it’s a while before the sadness subsides. We have to try and stay positive and Louis responds accordingly by starting to drink water. Whilst he has been sick and had fever, this cycle doesn’t feel quite as traumatic – probably through the lack of visible mucositis.

The handover to Daddy completes without the traffic drama of the last 2 weeks – but the teeth grinding is back with vengeance. The painkillers are nudged back up, which is a shame as it looked like this recovery was going so well. On the Tuesday, Louis has one of his famous outbursts. He was due to go down first for an intrathecal treatment and is nil by mouth. He hasn’t eaten since the start of the cycle but regardless, he loses it for a whole 40 minutes, punching daddy in the face and completely inconsolable, pushing daddy to the edge. Most humans would surely fizzle out after 10 minutes of rage – but not Louis and despite the hideous nature of the outburst, it’s good to know he has fight in him. He makes up for it later when Daddy offers him Peppa Pig ice cream for the first time - and this leads to him eating again. Although not eating huge amounts, it was certainly a lot less time between treatment and restarting food. The next few days contain similar outbursts – each 30 minutes. As tough as they are to manage, this is clearly his way of trying to retain some level of control in this situation.

As per the last cycle, this is starting to become a bit of a rollercoaster. The recovery has so far shown itself to be a bit easier and quicker, despite the outbursts. Not long after the handover back to Mummy, his temperature spikes at 39.2 degrees, he is clutching his tummy in pain and being sick. It looks like he has an enlarged bladder - probably from the mucositis. It’s only as we approach October that the nights become easier with less sickness and lower infection markers.

Happy Birthday

The week that saw the transition between September and October was relatively smooth. Louis is back to himself and on Friday 2nd October, Daddy celebrates his birthday in hospital with Louis. Mummy has hidden some presents and a cake in the room - although Louis may have asked Daddy every day of this week whether it was his birthday and whether he could open the presents and eat the cake hidden in the bottom drawer (but maybe we won’t tell Mummy). He also lays on a comedy act for Daddy, when out of nowhere, he tells the nurse that his mummy has the biggest boobies. After recovering from fits of laughter, the nurse confirms that this was a nursing first for her.

Louis had been refusing to do eye exercises, which consist of him covering up the eye which had been most impacted by the tumour. As you know from earlier in this blog, Daddy can be quite good at improvising. Daddy’s idea to address this particular issue was to buy a pirate costume for Louis, and to cover the good eye with an eye patch (genius). To be a good sport, Daddy bought an adult pirate costume as well. It just so happened that the costumes arrived just in time for Louis and Daddy to have a pirate party on Daddy’s birthday. Unfortunately Daddy isn’t as smart as he thinks as it turns out that Louis was happy to wear the eye patch – just not on his good eye (doh).

As a final gift, our consultant came into the room to explain that the most recent MRI scan had shown a significant reduction in the size of the tumour. This sounds great – and of course we took this as a positive step – but it doesn’t mean the cancer cells have gone / will go and nor does it mean that it hasn’t spread, so we agree to stay level headed and not to prematurely celebrate. This does add a little more shine to Daddy’s birthday. He is however brought down to earth when in the kitchen cutting cake. Daddy is talking to one of the new parents and it turns out their kid is 14 weeks old and they just found out that they have had a tumour since birth with 20% chance of survival. Cruel world.

On the Final Straight

It’s Saturday and the day after Daddy’s birthday. He is looking forward to a socially distanced meal with two friends…….but would you believe it….they’ve closed the M27 again!!!!! Grrrrrr!!!!!! Another unnecessarily painful journey home leads to Daddy narrowly avoiding a birthday disaster, crawling on to the drive 10 mins before the taxi is booked to take him to the restaurant - but at least there are some more gifts waiting for him at home.

So despite Louis being in a good place on 3rd October, it actually takes to 12th October to get cycle four started. The next few days are dominated by steroids, poo explosions (and wanting his dirty nappy to be put back on each time it was changed), temperature peaking at 41.5 degrees and the loss of his trademark curly eyelashes. Louis is also being sick when given anti-sickness and potassium and despite a barrage of tests and x-rays, everyone is perplexed as to what is causing the illness. As a result, the decision is taken to swap around the treatments – Louis is given cycle seven instead of cycle four (he’ll have the fourth next time). It is hoped that the reduced toxicity will enable Louis to get home. He has been well and truly battered by the first three treatments – a heavy protocol for any kid, let alone a 2 year old! This instalment also saw Louis have fun in a bath which he had not had for months - all a bit tricky with wires but we got there and was lovely to see him have fun and smell nice. It was also time for a pampering session for Mummy with Louis wanting to brush her hair (which Mummy secretly loves).

As a final note, it’s just before the fourth cycle (and a few days into her shift) that Mummy is informed that the husband of a close friend has tested positive for Covid and given they had dinner a few days ago, we inform the hospital and ask if we need to do anything. The answer is that Mummy needs to isolate for two weeks as a precaution, even if weekly tests come back negative. It’s going to be a long few weeks for Mummy and challenging in terms of getting work done – but more about that and whether we get home in the next blog.

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Initial Cycle Blues (Mainly Fragile With Added Roid Rage)