Finding Our Feet Part 2 (Hair Today, Gone Tomorrow)

This is the second part of the two-part blog about our first 3 weeks in hospital. This covers the second part of our ‘settling-in period’ but it became more of a baptism of fire at this point.

Recap

So quick re-cap - it’s now Sunday 2nd August and it was 4-weeks ago that initial symptoms showed. We have one chemo and 2-weeks of hospital under our belt. We now know that the cancer is Non-Hodgkins Lymphoma (NHL) as opposed to nasopharynx and the treatment protocol is now clear – seven cycles of chemo plus steroids and the other anti-sickness, anti-biotics, pain relief, etc. with the second and third cycles being the worst and also having the shortest recovery periods (3 weeks).

On the treatment front, we may have missed in previous blogs that should Louis have suffered from nasopharynx cancer as initially suspected, the treatment would have been a bit different. Due to the size of the tumour and the proximity to the brain and eyes, surgery would have been an absolute last resort however he would have needed proton beam therapy in addition to the chemo. This treatment can only be provided ‘locally’ in Manchester and Germany at present and given the tumour’s location, would have zapped his pituitary gland, which is vital to managing hormones and could have really impacted his growth and development. Suffice to say that although Louis still has cancer, NHL is a much better (or less-worse) outcome than originally thought.

This was supposed to be the last nice day?

After our initial adjustment period, we’re now bracing for the second cycle of treatment. The emergency chemo he was given was a higher dose of chemo than would have been used had we known it was NHL, but the right call due to the tumours location and that it was growing fast. The mix of the emergency chemo was slightly different to what was required for his prescribed protocol, so there were a few chemicals to get into his body to catch up.

The key thing here however is that we were bracing (future tense) – not braced. The effects of chemo usually take a week to show, so given the second cycle was due to start this week, we weren’t expecting the physical impact to show for another week – but to be prudent, we would treat the next few days as the last few before the visible signs made themselves known – hence we started to get some video calls in.

Yesterday (Saturday 1st), was a pretty good day and today should have been just as good as we only had steroids and obs due – time to make the most of it before his second and worst cycle starts. First nappy change went well – that was a first - plus he had bowl of Cheerios and wanted more - looking good :)

First ‘obs’ of the day – he loved this yesterday, what could go wrong? Everything apparently. Louis starts to use a phrase that will start to dominate conversation over the next few weeks as nurses and consultants come in to administer drugs, poke/prod/ask questions/observe/merely enter the room. The phrase is delivered with near upper-class politeness and directed as a statement or question to Daddy and Mummy and due to the politeness and fact he’s only 2-years old gives collective amusement despite the serious nature. The phrase goes like this “<add Mummy / Daddy>…….I want to hit the lady, I want to hit the lady please, please let me hit the lady”. Louis was so upset by his obs that he had to sleep it off.

He woke up a lot calmer and we got a few more video calls completed. He loved showing his toys to everyone and smiles were on-tap. Life is good.

Dough-nut say it….oh great, you did say it!

Sunday 2nd August through to Tuesday 4th mark the first big change in Louis – but sadly this is a pre-lude for the impact of the second cycle and we’ll cover that in another blog.

It’s still Sunday and Daddy notices a bit of hair on his pillow – nothing too drastic – that isn’t supposed to happen for a good week or so yet. so assume this is the usual warm up you’d experience. It looks like he also has a sore mouth as he couldn’t handle his lunch – but no visible signs yet, but you know something must be wrong if he can’t eat chips. Daddy gets Louis a twister ice lolly which helps for about 10 seconds before it merges with his hand, body and bed.

Mummy and Isabelle have gone to Drusilla’s Park with Uncle Stu, Auntie Emma and cousins Emilia and Sonny. We have a video call – and Daddy can see a donut kiosk behind Mummy (good job Louis can’t read). Then it happens – in slooooooooow motiooooooon, Isabelle approaches the cam….don’t say it, don’t say it…….she says it. Daddy reaches for the screen……..nooooooooooo…….and out it comes……”hi Daddy, we’re getting donuts” - and as expected, Louis kicks off in Dolby surround sound “I WANT DOUGHNUTS, I WANT THEM NOW” (this continues for what feels like hours). This phrase does not have a ring to it (pun intended).

The day continues with Louis screaming in pain every time he tries a cold chip, but he continues to try and tuck away some soggy Cheerios when he can. Hair is shedding everywhere and thinning ever so slightly meaning that Daddy can feel it on the end of his tongue and back of throat after cuddles. More requests to hit the nurses submitted…..not cool Louis….request denied.

The nurses offer up some electric hair clippers. This will provide Louis with the choice to remove his hair on his terms but he’s not up for it. We’ll be so sad to see that wild surf dude / almost but not quite Boris Johnson style hair disappear :(

We round off a pretty rubbish day reading his favourite story (Monster in the Woods) for the third night in a row and he fell asleep in Daddy’s arms listening / watching Moshi – tonight’s narrator is Brian Blessed – some sort of ballad about Brian being in a hot air balloon and needing to be quieter, which gives the child a soothing song to listen to whilst providing a subliminal parent joke for anyone who knows how loud he can be.

It’s Monday. Mummy starts new job today and we have a quick call before she goes into the office to meet the team. Despite not the expected start to a new job and team, Mummy feel very lucky to have the support and understanding. After the call, we successfully avoid the nappy fight, obs is not given the stamp of approval by Louis and leads to more requests to hit the lady. He literally has the entire contents of Willy Wonka’s Chocolate Factory in front of him (anything to get him eating) – but it doesn’t work. His mouth is really hurting now and the hair is getting everywhere, although no major patches of baldness/thinness except for a small patch behind the ear – we won’t need to shave his head at this rate.

In addition to even more requests to hit the lady, Louis has become completely non-compliant and totally withdrawn. Has asked for porridge (which Daddy cooks from scratch twice), scrambled eggs, Cheerios (twice), pancakes and eaten none. He’s clearly hungry but literally hurts him so much that he gives up after a bite.

At one point he perks-up so Daddy asks if he’s allowed to give Louis a kiss to comfort him. Louis introduces a new trademark Louis move - he points to his cheek like royalty – a sign that you are permitted to provide a kiss – but only on that spot and not to expect it to be reciprocated (he then wipes it away when Daddy is not looking – this move was only noticed due to Daddy deciding to capture this new routine on camera to show everyone).

We are very lucky here on the Piam Brown Ward. The Children’s Charity at Southampton General has kitted out the kitchen with an oven, hob, microwave, toastie maker, pots, plans, etc. We even have cupboard and fridge space, although the fridge space is of course limited given the amount of people on the ward and we therefore have a drawer the size of a shoe box as well as a very full free-for-all freezer. Downstairs, we have found a theme in M&S and WH Smith. If you like tuna and pasta…then this is the place for you – you could even do one of those fancy trio dishes – tuna and pasta three ways – all bland, boring and lacking protein. The only bit of fresh chicken is gone and Daddy really doesn’t fancy beef mince, salmon, burgers, sausages or ready meals. This place also lacks herbs, spices, other condiments beyond ketchup and jar sauce. This may not sound like a big deal to some of you – but even with a stacked work life, we have always made time to cook fresh and varied food. The thought of being in this place for 6-months + and not being able to cook decent food added insult to injury. Over the next few days, we do however discover that there is a Tesco Express within walking distance – but it looks like we will still need to be a little creative. The challenge is simple: cook fresh dishes that have decent protein content as well as carbs and fats; that can be created with less than 30 mins in the kitchen so that we are not neglecting Louis (nor hogging the kitchen); ideally using no more than two hobs (again for hogging reasons); using limited fridge and cupboard space and potentially with non-fridge items for a few days should we be unable to leave Louis for the 30 minute round trip to Tesco Express. Daddy sees an opportunity for a charity cookbook (free copy to be provided to the parents here of course).

It’s nearly 5pm and Louis has the first of many (standard practice) blood transfusions. It will take 3 hours by drip and hopefully perk him up along with painkillers ready for dinner. Cycle two was due to start today but looks like this will be tomorrow now.

Our last attempt to get nutrition into Louis ends badly. Food made him scream in pain and a smoothie triggered the desire for orange juice which stung his lips. We end the day with Louis crying himself to sleep with the words “want my juice, want my juice, want my juice”.

The treatment protocol includes intrathecal chemo – essentially this is chemo delivered via lumbar puncture. It requires general anaesthetic and therefore nil by mouth from 2am. Given his lack of ability to eat, Louis is getting fed by drip. When this is turned off at 2am, he celebrates by shouting blue murder and having a massive dump. Great. It takes a while to get to sleep before a 4am wake up for obs a huge wee to clean up and another Moshi session. Then it starts - 7am chemo.

It’s only the morning, but already, this has become one of the saddest days of the journey so far. Louis has been sleeping on his back and when he turns his head, the hair from the back of his head has pretty much gone. Picture the haircut that Ronaldo (Brazilian footballer) had in the noughties. Big moment seeing him like this – beginning to look like a proper cancer patient.

At 11am, Louis goes down for his lumbar puncture. He has started to recognise the walk, the room, the people, the process. Pure terror fills his eyes as the anaesthetic goes in. Flop.

Daddy is told he has an hour until he wakes, so he makes the most of it by going down the road to Tesco Express and having a few check-in calls with the team at work. Two bags of staple cupboard items and he’s sorted – Daddy even procured some ‘cooking’ wine. When he gets back however, Louis has already returned. Although Daddy feels bad, he is happy to see Louis having a cold squeezy yogurt – the first bit of food in two days. Sadly, Louis has lost even more hair now and it’s all over the floor, so Daddy collects in a bag as a little keep-sake. After cuddles and more obs, Louis has a nice 3-hour sleep.

With some Covid restrictions starting to lift – including gyms opening, Daddy decides he wants to stick his middle finger up to Covid and cancer by regaining his fitness. Having sat between 9-12 % body fat for quite a few years and then pausing fitness without reducing the eating and drinking, Daddy has developed a ‘Covid belly’. He is therefore very excited to see his TRX fitness gear turn up, although admittedly, this doesn’t get used for a few weeks. We then receive a message from Uncle Stu, who during lockdown has been modelling his hair on a cross between Kim Jong Un and the well-known retro confectionary you may know as a Walnut Whip. He says he wants to shave his hair for charity and help Louis by showing him someone he knows without hair. This was an amazing gesture and many of you who read this blog will already have seen his justgiving page, which raised over £3,200 for Abbys Heroes, surpassing his £2,000 target by 61% (well done Stu).

Back in Room 2, Louis has a high temperate and shivers for 30 mins. Blood samples are taken and he is being given anti-biotics as precaution – this becomes normal practice over the coming weeks/months. At one point, it started to look like he was going to strangle himself with the numerous tubes plugged into his little body and Daddy had to cuddle/restrain him for at around 30/40 minutes until his energy finally dissipated. If you are a parent, you’ll be familiar with those repetitive kid songs that played over and over – Baby Shark, multiple tunes from Peppa Pig – the list goes on. Today Daddy got to listen to a new one – it’s called “Get off me Daddy, get off me Daddy, GET OFF ME DADDY” (a chorus repeated constantly, non-stop, for 30/40 minutes in a very moany and sometimes furious tone). Daddy can tell you now – the restraining was unpleasant but was nothing compared to listening to this new tune as he lay there, hoping it would be knocked off the top spot of the billboard charts very quickly. On a positive note, if he has this much fight in him, we have a chance of fighting this retched disease.

We have become accustomed to Louis asking to ‘hit the lady’ now – and Daddy has explained that boys don’t hit girls – ideally not boys either. However, when a male consultant comes in later in the day, Louis asks to hit him, which at least gives us some relief that he doesn’t discriminate. The day finally ends at 11pm following some obs :(

When we wake up on Wednesday, Louis has switched from his shady Ronaldo haircut to Tin Tin (which ironically was one of Daddy’s more polite nicknames at college – or at least the ones he was aware of). Louis feels rubbish with a temperature of 38 degrees and it looks like we might be back in isolation to protect other patients on the ward, who would also be vulnerable when it comes to infection. Louis sleeps most of the morning and no food or drink passes the lips for the third day in a row bar the small bit of yogurt he had yesterday. Louis is not even drinking water now as it’s too painful. He is getting all the fluids and nutrients he needs via drip – but it’s still frustrating that he doesn’t take in water at least. He has been drooling a lot this week and it turns out he has an inflamed throat and can’t swallow and therefore the morphine is increased and provided more frequently.

Late Wednesday morning, we get news that he has an infection in one of the tubes going into his body. Luckily he’s on antibiotics already, so we may be ahead in fighting the infection but it does means Daddy is in isolation from rest of ward - so no using the kitchen and no cooking for a good 48 hours :(

Given the threat to his eyesight, Louis has started getting visits from ophthalmologists. At this stage, they can’t do much as they need to wait for the tumour to shrink – but they come in every now and then to start building up a relationship in hope he is compliant when their turn to poke and prod him comes. Unfortunately, they also get the ‘I want to hit the lady’ treatment. Eventually a peace offering is made in the form of a dinosaur sticker, which Louis insists they stick on their uniform.

Come 3pm, Daddy gets a bit of work done. His employers have been great and not putting pressure on Daddy to work – but it keeps Daddy busy and he wants to try and keep on top things a bit but just as he starts to get in the flow, Louis starts to shudder and shiver. Temperature is high, hands are cold and we decide to self-medicate with cuddles and hand holding. Louis is in a sh*t state – and this isn’t even the worst of it – that is going to be reserved for next week (one week after the treatment). The treatment really is beginning to ravage his little body and he sleeps most of the day. The obs that we talk about (temperature, heart rate, blood pressure) can happen at varying intervals depending on proximity to treatment, sickness, whether he’s on morphine. Tonight we’re in for a treat – hourly obs throughout the night – so intense and sleepless. He’s gone a little puffy in the face due to the amount of fluids that get pumped through him to help flush out the chemo but he does at least muster the strength to talk to mummy for a little bit. We have a few wake ups during the night as expected – he resists them a few times and needs help to calm down. Temperature goes to 39.4 degrees at one point.

It's Thursday morning , Louis is really puffed up in the face but at least having a bit of a conversation. There is a bit of blood around the mouth and on pillow from the mouth sores that are starting to develop and he is at least maintaining some of the manners we have taught him, whispering “Daddy, I’ve done a trump…..pardon me” :)

The intrathecal / lumbar puncture treatment that he is currently having every week on a Tuesday and Thursday will not happen today due to the infection and will probably be next week. Treatment delays will become a theme for us over the coming months, which is very worrying as parents as you can’t have too big a gap between treatments – the intensity needs to be maintained, although we are told it is quite common to experience delays through slow recovery.

It’s not getting any better today. Louis complains that his tummy hurts, he is crying in pain, still getting a lot of hair in his mouth, ulcers developing inside the mouth and around the lips and a swollen throat – he’s having pain relief but really struggling and inconsolable :(

By Friday, the morphine levels have been increased and the level seems about right for him to tolerate the pain. It doesn’t stop Louis from screaming though about not having a ‘cold muzzy’. It looks like a song about muzzys is about to be released – but we doubt it will knock classics such as ‘get off me Daddy’, ‘I want to hit the lady’ and the ‘want my juice’ song from the top spots in the charts. We can see you looking at each other and frowning – asking yourselves what we mean by a cold muzzy? Well, Louis is an aficionado of muslins and has been for a quite a while – he is to this white cloth what a sommelier is to wine. Wine tasting notes may refer to oak, tannins, an elegant and velvety bouquet of fruity flavours with a hint of vanilla – but in the world of fine muzzys, the test is essentially how much dribble has been absorbed into the muslin. This can be tested by the wetness of the muzzy and additional characteristics such as slightly dark and dirty looking corners. There is also a certain aroma that accompanies this and Louis can tell if a muzzy is clean and dry – in the muzzy world, this is referred to a ‘crusty one’. Safe to say Mummy and Daddy prefer a decent bottle of wine to a cold muzzy.

It’s approaching 7pm and Daddy is still on cold rations due to being banned from the kitchen – but he is still allowed off the ward to get food. M&S salads are getting a bit tedious now, so Daddy decides to see if the hospital canteen is open. He can’t see the opening and closing times as he enters, but is pleasantly surprised to see it fully operational and guesses it must be open late as this is a hospital and the staff work horrendous shifts and must need access to food at all times right? There’s not much on offer so Daddy opts for the fish and chips but as he pays, it appears that the staff have just realised the time (18:58), and it’s time to close. Alarms bells should have rung at this point – but they didn’t. Daddy goes back to the room and attempts to eat his food but someone must have has snuck into the room and installed a sensor on the reclining chair because every time he puts food to mouth, a drip alarm goes off. They are playing in harmony and it’s all a bit chaotic on the ward tonight, so it’s a while until they are attended to. Now, we don’t know about you…..but battered fish is only supposed to be crispy on the outside – and definitely not semi (well completely) solid on the inside….but Daddy is hungry and doesn’t think about how long that food has been on the canteen counter – no doubt within food regulations…..but nonetheless. Anyway, short life lesson, don’t ever buy food in a canteen when there only minutes to close – unless you need laxatives and don’t have access to them.

Anyway, this takes us to the end of this bedding-in period with Louis stuck in hospital for three weeks. We have found our feet but Louis has lost his hair and we have all lost our sh*t on multiple occasions. Daddy hands over to Mummy on Saturday 8th August in advance of what is supposedly going to be a worse week (turns out it does get worse and not just next week). We grab our weekly slot of face time, which equates to 20 minutes this week.

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