Finding Our Feet Part 1 (The Handover)

This two-part blog is all about our first 3 weeks in hospital and includes the aftermath of his first chemo cycle. We split it in two because it was during the second half of this ‘settling-in period’ that we started to see the savage effects of the treatment and that felt like a blog in its own right.

Home from Home: Room 2, Piam Brown Ward

We’re writing this as about 6 weeks into our hospital stay. It still feels a little surreal. You get a week at home and a week in the hospital – part dictated through Covid that you only have one parent in the hospital and that they stay a minimum of a week before handover. This is probably the arrangement we would have come to regardless given that swapping every few days is less practical when the hospital isn’t on your doorstep.

Late morning, every Saturday, one of us jumps in the car and drives 90 minutes from Worthing to Southampton (usually dropping off Isabelle en route to Nanna and Pops as she can’t visit Louis). You arrive at the hospital and there is the elation of seeing Louis and each other. Then after 30-60 mins, the other one of us leaves and experiences that feeling of freedom having just spent a week in a 4m x 4m room with a few short breaks each day to grab a coffee and some food and having to experience the ups-and-downs of fixing Louis. You then have a week at home, working, spending time with Isabelle, maybe grab a socially distanced meal or drink with a friend before doing the same again the following Saturday. It’s a bit like living in a bubble.

The Handover

Before settling into our week-on, week-off routine, we both spent 1.5 weeks in the hospital. Mummy did the first ‘shift’, which started on Friday 17th July when Louis went into Southampton. It ended Wednesday 29th when Daddy took over through to 8th August.

When Mummy and Louis arrived, they initially were in room 2 of the Piam Brown Ward. At this point we’d not had the diagnosis and we spoke about the fact we’d been put on a cancer ward and how odd it was and whether this meant they thought he had cancer – but the nurses explained that anyone with a lump would come to the Piam Brown anyway. Due to where the tumour was, they were moved to a shared children’s neurology ward (around 12 beds in an open ward) for a few days. It was difficult for Mummy and Louis to sleep as TVs were on late without headphones and silence was punctuated with crying and screaming. The only bonus on this ward was that the COVID rules weren’t so strict so made the most of being able to escape the ward and go out in the fresh air.

After a few days, and the decision to start around on emergency chemo, Louis and Mummy were moved to the Piam Brown Ward, which consists of 12 beds - 8 in private (isolated) rooms and 4 split across two double rooms. There was a little bit of bed hokey cokey at first as patients needing isolation took priority and there were swaps between the private and double rooms. We then settled into Room 2 for the foreseeable future – this is where Louis has had most of his treatments and spends time recovering in isolation. At this point, this ward was still locked down, meaning one parent only allowed in and no trips off the ward for coffee, food and breaks. It was in this environment that Mummy had to absorb the news of the initial diagnosis and unable to break away and reflect – maybe a good thing. Whilst we thought it was harsh to not be allowed out of the ward, we should spare a thought for those parents that were here during lockdown. When it started, parents couldn’t swap at all, so whichever parent did the lockdown shift did so for 3-4 months without break, without communal parent rooms, unable to leave the ward for the café or shops.

While we were waiting for the full diagnosis, Louis gets ready for his emergency chemo, changing his cannulas (that he had previously ripped 7 out of his hands and feet) for a PIC line, another CT scan, NG tube fitted (which again he pulled 3 out with mummy despite her best efforts restraining him). It felt like Louis was under general anaesthetic permanently and although mummy had done this with Isabelle, it was quite distressing to do multiple times. Feeling the dead weight and putting him on the table, giving him a kiss and then taking the solo walk back to the room. Slightly unnerving for mummy as her navigation skills are not that great and got lost many a time! However on a Thursday this was made a bit easier as when back in the room, you are greeted with an M&S goodie trolley (courtesy of Abby's Heroes) which in the current climate comes helps ease the isolation in the room. Prawn sandwich, cheese tasters and a salted caramel millionaire shortbread did the trick. Also nabbed a bag of Percy pigs for Louis who has developed a taste for these always requesting two at a time.

Louis has now had everything he needs to start his emergency chemo and the first drug is steroids alongside the chemo. The steroids help with appetite but for the moment it takes a dip. It also means mummy gets the brunt of the roid rage and disturbed sleep that follows - and even worse, Louis has no access to dumbells so there are no "gainz’ either :(. Louis takes the emergency chemo well, playing with the play lady making green dinosaur cloud slime. You would have thought it was just an ordinary messy play day.

It’s Wednesday 29th and time for the handover. Daddy gets ‘the briefing’ – reminds him of his younger days when he used to wake up on a Saturday morning with a bunch of Post-It ‘to do lists’ being slapped on his head by Mummy. It was quite a bit to take in – procedures, etiquette, etc. Got a bit of a telling off when unable to recall it all to 100% accuracy, which reminded Daddy of lockdown and when he was asked (told) to sort out Mummy’s (hair) roots. During what nearly became an international incident, this ‘how to dye roots’ briefing consisted of a 10 second Youtube video clip, after which nothing short of expert craftsmanship was expected (Daddy resigned from his post of hair stylist shortly afterwards).

Daddy’s shift started well. Sweeping views of the city (didn’t realise Southampton was so green). Lots of hugs with Louis before bed.

Then it started. Louis is wired up to 3 machines, which at any given time may be administering fluids, nutrition, chemo, steroids, anti-biotics, anti-sickness, etc. As the drip approaches completion, there is a pre-alarm and then an alarm to signal completion. Occasionally, the alarm may go off more than once as the nurses are super busy trying to keep everyone safe. Imagine this plus ‘obs’ (observations), which consists of blood pressure, heart rate and temperature and can vary from 1 to 4 hourly intervals depending on treatment and well-being. Daddy learned in the first night that you can be up 1-3 times an hour as the pre-alarm and alarms go off (which you get out of bed to switch off) and then the obs can wake Louis up, which leads to crying or cuddle requests from Louis. Pre-alarm, alarm, cuddle, obs cuddle, repeat, repeat, repeat…..

You’ll notice the observation about sleep deprivation appears in the part of the blog that talks about Daddy’s time – that’s generally because Mummy just cracks on with it – and Daddy…well it just cracks him up. Daddy had actually considered entering ‘SAS Are You Tough Enough’ on TV - but this confirmed what the sleepless nights of early parenting had suggested – that Daddy is a total melt when he doesn’t get sleep. Would probably make good TV mind – for those of you familiar with the snickers advert featuring Joan Collins – that’s Daddy without food or sleep.

It’s Thursday morning – start of the first full day and Louis has been getting a lot of fluids pumped through him for hydration and flushing the chemo out of the system. In the latter scenario, nappy changing is required a lot – so you can imagine what happens if you sleep for a few hours. Upon waking, the bed is soaked. To make it worse, Louis wants to stay in what he calls his ‘wee wee nappy’, tries to snatch it back and cries and shouts for ages after. Trying to change a non-compliant child’s nappy and bed with various wires and tubes in the way / at risk of twisting is not fun (all whilst gloved up and trying not to get covered in chemo wee that can cause the parents to be ill) – luckily a nurse on hand to help. Louis is due an intrathecal treatment (chemo administered as a lumbar puncture – into the back, to kill cancer that may have entered the spinal fluid. Whilst under anaesthetic he has a tube placed up his nose to support the treatment. When he awakes, you can hear him a mile off. He’s trying to rip the tube out of his nose, which will do a lot of damage. Daddy had to restrain him for around 2 hours and then stayed next to him for while in case he was unable to resist the temptation of ripping it out. He instead resorts to trying to use snort power, which makes him sound like a broken dragon trying to breath fire. Eating, drinking, conversation, cuddles….all off the menu today. An unfortunate effect of the tube in his nasal cavity means he sounds like Marge Simpson. The remainder of the day consists of him saying “help, help me” and asking me to take the thing out of his nose followed by ‘help me daddy, help me’.

It’s bedtime and it’s time for Daddy to train for the sleep deprivation part of the SAS selection programme. The good news is Daddy doesn’t melt under pressure – but sadly, should Ant Middleton have sent in a mock enemy, we would have been over-run pretty quickly as Daddy out for the count. He has no idea how many times the nurses came in that night, how many pre-alarms and alarms, whether Louis cried….nothing….

Friday morning and there is the usual morning nappy fight. It’s mummy’s last day of work at HSBC and she has been on compassionate leave for the last few weeks. She goes into London to drop off her laptop.

It’s been a tough few weeks and Daddy’s hospital experience is just starting - but there is some good news. Another scan has been performed after the emergency chemo and it looks like the tumour may have shrunk by 50%. Although positive, this doesn’t mean we can break out the Champagne just yet. With this sort of tumour, it would be expected to see good progress in the initial stages of treatment but this does not mean it will completely kill the cancer cells, which is what we need. There is also the good news that there is no evidence of cancer having reached the brain or being present in the spinal fluid and spreading – but it should be noted that the initial treatment may have removed this and therefore we don’t know if it had been spreading and so is being considered as stage 4. The biggest risk for now is whether the cancer has entered the eye as this would be a route to the central nervous system and brain. Based on the above and given you only get one decent shot at killing Non-Hodgkins lymphomas, the treatment protocol will remain as planned.

Daddy returns to the room to find Louis has started to recover his appetite – he’s clearly been looking at food porn on Instagram as he has covered his 3 pancakes in Cheerios, honey and marmalade. He follows a good portion of this breakfast with 3 oranges, most of his chicken nugget and chip lunch as well as dinner. Continuing the upward momentum, he starts to allow Daddy to change his nappy without a fight, although teeth cleaning remains strictly banned by Louis. During the day, Daddy comes across a children’s sleep and mindfulness app on the phone – it’s called Moshi. Daddy quietly chuckles when he sees the $40 annual subscription cost – what sort of muppet spends that on an app – let alone a kiddie sleep app when you can get free versions of white noise, etc.? Still – he signs up to the free trial…what’s the harm in that? Turns out Daddy’s the sort of muppet to spend $40 on an app…the Moshi app was amazing. It really relaxed him and he quickly fell asleep holding his hand. We continue to use this every night and it’s an essential part of our bedtime kit now following story time. The Moshi app works on grown-ups too – Daddy had broken off three large triangles of Tolberone and placed them on the bed ready – but he was starting to wonder whether he’d muster the strength to devour them. He did…..and that gave him the strength to eat an additional 2 triangles :(

It’s Saturday 1st August and the last day of this bit of the blog because unbeknown to us, we will start to see the more obvious effects of the chemo the following day. Despite the nappy routine having been ok, we dip to a new low by spending 2 hours in a sulk post the early morning nappy change, supplemented by the constant chorus of ‘get this thing out of my nose’ (again and again and again – he has some stamina this kid!).

The rest of the day is great. Daddy was expecting to see the effects of chemo to take effect at the end of the following week and as a precaution, holds video calls with both sets of grandparents as we wanted them to see Louis before it all kicked in. Louis was on form and showed his cheeky side and showing some of the toys he’d been collecting. Later on, a video calls with Isabelle and Mummy, who were attending a Mermaid themed party – lovely to see Isabelle having fun and the both of them enjoying each other’s company. Another boost….Covid restrictions slightly lifted and parents are allowed off the ward, so we can go to Costa for coffee and there is a small M&S for food – plus a Tesco Express a 10 minute walk away to buy ingredients for cooking in the kitchen provided for parents on the ward.

Louis is entertaining us with his King / Diva-like attitude in having his ‘obs’ taken (obs is short for observations and consists of pulse, temperate and blood pressure). He looks at the nurses and sticks a finger out for the pulse check. Then he removes the clip from his finger and fixes it back himself saying he will put it on properly (because clearly Doctor Louis knows better than the nurses?). He also seems to be used to the nose thing more and it’s hardly noticeable to him.

To round off the day, pizza is delivered at the courtesy of Abby’s Heroes. The nurses and Louis decline Daddy’s offer of some pizza, so he ends up with a full 12” pizza to himself despite having eaten dinner already. The entire pizza somehow goes down a bit too easy :( The moshi app does the business again – watched bit of tv and off to bed.

We’ve got a few blogs under the belt now and the pictures we’ve shared probably make this process look fairly manageable. Now that we’re all warmed up, it’s time for reality to bite as we will start to see the full impact of the cancer and treatment hit Louis – the physical side will certainly be more evident, so please be warned :(

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