Homesick

If the last blog was business as usual, then this blog should wake you up a bit. The fourth cycle takes us through October and into November and it’s during this time that we will get news as to whether Louis will get a chance to get home during his treatment.

14 Days Later

Louis started his fourth cycle on 12th October. You may remember from the last blog that Mummy has arrived at the hospital and a few days in has been told to isolate in her room for 14 days. Although not directly in contact with someone with Covid, it was felt that extra precaution was needed having been in contact with someone who’s other half had Covid. Mummy is in isolation for 2 weeks until Wednesday 21st, so we agree that when Daddy takes over, that he will do 1.5 weeks through to Saturday 31st October.

Spewey Louis

If the last few treatments saw extreme mucositis and a huge side serving of infection, then spew was the main course for this treatment – with another generous helping of infection (but not so much mucositis). The consultants decided that Louis had been given three very harsh treatments and wanted to give his body a break if possible – and that came in the form of swapping his treatments around. His seventh cycle would be the least toxic, so they gave this as the fourth cycle and planned to pick up from where we left off for the following treatments.

During this phase, Louis often saw his potassium levels dropping and he tended to be sick almost immediately after a shot of potassium – and ironically after he was given anti-sickness. This is probably a daily, if not multiple times per day occurrence during this cycle. We also found that Louis would be sick at the mildest upset, e.g. he would be sick if he didn’t want obs or he was told off (or sounded like he was being told off but wasn’t). Understandable if he was really worked up – but it literally took nothing to make him sick – we may as well have used our room as the (sick / poo / wee) bowl and spare bed linen stock cupboard.

On a positive note, Daddy has partially overcome his (pretty pathetic) aversion to other people being sick. We are told that there is a possibility that he may get home towards the end of this cycle but not to get our hopes up in case – advice that we obviously try to follow but fail big time.

What Starts Well Ends Well?.

So it did start well. For a day. The day after chemo starts, one of the nurses brings in Happy Meal and Louis does what it says on the tin (or box). On hearing of its pending arrival, he shouts “yes, yes a happy meal, I’m so excited”.

The following day, we have some news. Louis has struggled with infection throughout his treatment and we now have a new one to add to the list. It’s called ESBL. This does not stand for Euro Beach Soccer League but for ‘Extended Spectrum Beta-Lactamase’. ESBL-producing bacteria that can't be killed by many of the antibiotics that doctors use to treat infections, which makes it very hard to treat. Some people talk about ESBL to MRSA as being similar – they are both hospital bugs.

We’re not medical professionals (so please do not take this as fact), but our friend Dr Google suggests that EBSL producing pathogens are actually more prevalent than MRSA and that they are resistant to drugs used for MRSA, which doesn’t sound good. EBSL can cause systemic infection and can be pretty dangerous if not treated quickly and effectively. In short, it’s another complication, especially in someone who has their immune system taken down every few weeks through chemo. A non-medical side effect of having ESBL is that Louis is now banned from socialising with the other kids on the ward for a year so that the risk of spreading ESBL is minimised. This also extends to use of the playroom – even by himself. The positive though is that we will always have to have our own room so that he can isolate from other patients.

Death Becomes Her

In the last blog, we mentioned how amazingly Isabelle has handled the situation and how brilliant the school has been. To completely avoid a blip or two would have been very lucky. We were in close contact with the school and there had been one-or-two minor skirmishes between Isabelle and a classmate, which may well have just been normal everyday moments of the school experience – but amplified slightly due to the situation – we were not overly worried yet, although Isabelle was visibly upset. Then we started to hear that Isabelle was having a little cry here and there at school.

It took a bit of digging, but Daddy finally gets her to open-up about her fears that Louis might die. It turns out she had overheard a conversation about the child on our ward that passed away (a few blogs back) and she had heard that they had been in hospital for a long time and therefore assumed Louis might die as he had also now been in hospital for ages. Daddy had to explain that the other kid had been in for 2 years and Louis was nowhere near that mark. Also, that Louis's and the other child's cancer were very different. Daddy used an analogy about how people cut themselves and how it might feel different or bleed more / less depending on where the cut was on the body. At this stage, we can’t have her worrying about the possibility of death but also don’t want to lie to her in the event it takes a turn for the worse as she may lose faith in us as parents. A few days later, she comes home with a big ‘get well’ card for Louis that she had made at school as a project with a few of her friends and involves pictures of dinosaurs and Peppa Pig.

Ever since Louis was diagnosed and the shift pattern of Mummy and Daddy swapping at hospital every week, we started a new tradition with Isabelle so that every Friday night before swap over, we have a movie night with treats. This week, Daddy makes a salted caramel milkshake with popcorn, caramel sauce, marshmallows and salted peanuts (and maybe a small amount of sweets and popcorn). We settle in to watch Honey I Shrunk The Kids and during the course of the movie, a red ant that is helping the (shrunk) kids get back through their (now supersize) garden is killed. Isabelle tells Daddy that it’s ok for ants to die because they bite people in real life - but that she doesn’t want Louis to die. She is of course given the chance to ask more questions or say what’s on her mind but there is nothing at the moment. It’s good that she’s talking about it, but heart-breaking that she is having to face into such thoughts at such a young age :(.

In some ways, she is maybe ahead of her years. She frequently embarrasses boys double her age by swinging long sets of monkey bars with speed and ease when they can’t get to the second bar. I also don’t know many six-year olds who tell people that their favourite food is octopus and sprouts! It was also this weekend that she saw some clams on a fresh fish counter and we got them free because the shop assistant was so impressed by her willingness to try them (we must admit the tasting session didn’t go that well but kudos for her trying two of them!).

Be Prepared!

With the handover coming up and even the remotest possibility that Louis may get home, Daddy has finished painting the hall. We bought our house a few years back after falling in love with it – but the reason we could afford it was due to the work needed. Although the big structural work has now been done, the hallway could also be considered a big job in that it is floor to ceiling over a few floors (excluding sanding/varnishing of floors and spindles) - and Daddy is doing the work, which means a mountain will be made out of a mole hill. Anyway, Daddy is feeling proud of himself. After work each night and over the last two weekends, Daddy has sanded floors, sanded walls, filled them, sanded, filled, mist-coated, filled, sanded, filled, sanded, mist-coated and then added two top coats ……floor to ceiling and a bit of caulking, skirting board, dado rails (mountain….mole hill).

In the meantime, Louis has come off a load of his meds and making good progress bar the puking and there is talk of him coming home a few days after the handover to Daddy, just in time for half term……what amazing timing as it means we can all be home together without interruption. We just need Louis to have his bloods and temperature in good condition. The day before Mummy escapes, Louis wakes a little snotty – but we are still hopeful. Mummy has been using her extended hospital stay to finish the training on how to use the machines to feed Louis through his NG tube (nose line) and do all the safety checks such as aspirating (taking a sample of fluid from the gut and testing it’s acidity, which confirms the line is still wired correctly and that the feed will go to his gut).

Mummy is given the great news that she can leave isolation, meaning a handover to Daddy the next day (Wednesday 21st). The nurses line up outside her room with homemade placards / messages telling her she has her freedom back. Daddy arrives the next day, Happy Meal in-hand to have with Louis and Mummy.

On arrival home, Mummy takes no time in getting the house sorted and preparing for Louis’s potential visit home. First port of call is to get her Nanna and Pops around to construct Isabelle’s bunk bed (because as Isabelle explained to Daddy…..”we need to get Pops around to build my bed because Mama says you can’t be trusted to build it”). There is also some prep work in Louis’s room. The biggest, most impactful thing Mummy does however, is to phone Dad up and provide some feedback on his painting. Mummy explains that she is seriously impressed…….but that the white paint used on the ceiling and top half of each wall was too shiny and needed to be matt (not sure if you knew this, but these walls had been sanded, filled, sanded, filled, mist-coated, filled, sanded, filled, sanded, mist-coated and given two top coats……floor to ceiling). As Daddy points out, the paint was exactly the paint that Mummy had asked for – and he had checked it against a tin that had recently been used. Anyway, Daddy will at some point have the pleasure of some sanding and painting over the seriously impressive paint job.

Here We Go Again

The end of the week had been mentioned as a day to get out but come Thursday 22nd, the infection markers were up slightly and it looks like Louis will get two days of antibiotics. This will be extended to five days if needed – with a 24 hour gap needed afterwards to ensure the temperature, etc. stays normal without the anti-biotics. Hopefully, we get two days of anti-biotics and get out Monday.

Louis helps to pass the time by chucking up and making random comments. Our favourite was on the Friday when he picks off a loose bit of finger nail and shouts “oohh, aaargh, this can be our pirate treasure”. Pleasant child. Louis also makes sure that Daddy hasn’t forgotten that he can lose his sh*t with the best of us. Daddy makes some homemade sausage and egg muffins and being considerate, decides to cook some sausage for Louis. Daddy is in a great mood and proud of his efforts having turned the sausages into patties and cutting polystyrene cups into rings that he puts in the pan to make perfectly circular fried eggs. We’re not sure if it was Daddy’s smug, happy face – the type that people want to punch - or maybe just the meds, but Louis throws his food on the floor and then decides he wants it. We’re not sure the three second rule applies in a hospital, so it goes in the bin along with Louis’ manners as he follows up with a 50-minute rage, multiple vomits and bed changes (at one point we managed 3 bed changes in 10 minutes). At the 50-minute mark, Daddy leaves to wash up, only to come back and find Louis smiling ear-to-ear with the nurses having made an improvised phone stand from sick / wee bowls and Sellotape so that he could watch YouTube.

We get to the end of the weekend and the light is at the end of the tunnel – except it isn’t. Louis is sick and gently wailing with tummy ache. Nevertheless, Daddy is finishing his training on how to support Louis at home, which includes reading a big folder that contains basic medical terms and advises on nutrition. Essentially, we have to treat him as we would a newborn or someone who was pregnant to the extent he can’t have tap or mineral water – it has to be boiled / sterilised first. no unpasterurised stuff, no ice cream, unpeeled fruit, raw dried fruit.

Get Your Violins Out and Make Sad Music Whilst Reading This

Anyway, it’s confirmed Louis needs more anti-biotics and our dream of having one and a bit weeks together as a family is dwindling away. Louis hasn’t been out for months, him and Isabelle haven’t seen each other and we’re all feeling a bit deflated. At the moment, Louis is constantly being sick and having an upset tummy plus there is the behaviour. Mummy and Daddy are having to clean up the mess and tolerate the behaviour. Lots of sleep deprivation for all of us. It’s all a bit amplified at this point in the process. This was the least worst cycle and if he can’t recover well enough to get home, how can we expect him to get home for the other (worse) cycles? Will we ever get home before treatment the ends at some point around (maybe) February? It just feels like our lives are on hold, lack of routine, un-productive, having to watch the kids go through all of this and feel totally helpless. A very grumpy Dad didn’t buy ingredients to cook today so decides to order a Deliveroo. Louis decides he’s not going to sleep so Daddy has to take a punt on when he will go down. Anyway, the call comes that the driver is at reception – just as Louis chucks up out of both ends. Daddy has to leave the nurses to keep an eye on Louis whilst he runs down to get the food. Despite the offer from the nurses to clean him up whilst Daddy ate in the staffroom, Daddy is past the point of no return and sorts Louis out, waits for him to go to sleep (which takes an hour) before sitting in the dark eating his cold meal at 22:30. What a day. We get them. People tell us we do amazing – but we really do have our wobbles. We always try to remember however, that there are people in worse situations and whilst it’s ok to have an off day, it’s also good to sleep on it and get perspective.

The Nailbiter…..Maybe You Could Use Your Nails As Pirate Treasure As Well?

So it’s all in the balance. We have a few more days of antibiotics but even Friday/Saturday could be ambitious. There are a few concerned faces on the ward as they know how important it is to get him home – but it has to be safety first and we start to get a feeling that they have seen this before and know it’s false hope on our part.

Anyway, time for some good news. Only joking. Isabelle has a cough, so we get her tested for Covid. Not a big deal you think – lots of people do a test. Well it matters if results are taking 48, 72 or more hours and you have to isolate for that period….now the whole home visit is in jeopardy even if Louis is declared fit. It could easily take until Saturday for the result – and we’d be due back Tuesday.

We hear that the consultants are really keen to make the home visit happen and they are starting to prepare for discharge on Friday. Our patience is being tested though. Louis looks like he is keeping his temperature at bay and then spikes – hopefully a one off. Isabelle’s test is not back (so mummy escalates it via the hotline but wasn't promised it would help) and Friday draws closer.

It’s Thursday evening and we get a negative result for Isabelle (phew), so it all hangs on Louis. He gets through the day without a vomit. He just needs to last the night without being sick…without a temperature. The antibiotics have been finished for a day now.

It’s 02:37 am on Friday 30th. Louis throws up half of his feed. That’s it. Game over.

Or is it? Apparently it’s not 100% over. Louis only had one of his two anti-sickness medicines today. If he’d had both, there would be no chance of leaving. The team will make a call in the morning….or rather we should say later in this morning.

It’s around 09:00 am that we get confirmation that Louis will be going home. This is the news we’d been waiting for. Surely something bad is going to happen? He will need to be back on Tuesday – not sure what the plan is exactly but will confirm later. The plan was to get out around midday but we are at the mercy of a delivery from the pharmacy and in the end, we get out around 16:30 – it’d been a while since we experienced the joy of the rush hour anyway (and were surprised that there was one with Covid still raging).

Are We There Yet?

We get home at 7pm. After unloading the car, Nicki goes to get Isabelle from her friend’s house. Isabelle has absolutely no idea that Louis is home. Daddy and Louis wait in the lounge to spring the surprise and the pics and vids of them being re-united are heart melting and can be seen below.

There’s no time to lose for Mum and Dad - we need to get Louis wired up to a feed for the first time. Bedtime is extended from 1930 to 2200 for the kids and it’s an amazing, fun and laughter filled few hours. Louis can’t take his eyes off his sister – he really looks up to her and keeps reaching out to hold her hand. Isabelle is almost paternal in how she interacts with her brother. We decide that Louis can sleep in the bottom bunk of Isabelle’s new bed (the one that Daddy couldn’t be trusted to build). To be fair, if we’d try to separate them, there would have been a riot and Louis might have had anxiety given he has slept with Mummy or Daddy a metre away from him for the last few months. Mummy and Daddy finally get to sit down. We realise that we have not had more than 30-60 mins together per week for the last 3.5 months and not even sat face-to-face in a private environment and talked about everything that had happened – the last time was before diagnosis and the departure for hospital in Southampton.

The next few days are great. We manage a short walk each day, although Louis is in the pram given he hasn’t been using his legs and not able to walk at the moment. Does a mean power crawl but going to take some time to get back to the old Louis. It’s a bit cold so can’t be out too long. We spend time watching TV, playing games, eating together. Saturday was Halloween, so Daddy makes a few ghoul-themed treats with Isabelle and Louis wearing Halloween costumes.

Monday arrives – one day before we go back. We have a relaxing day planned and one of our favourite meals planned for the evening. We want to enjoy the day before we have to get mentally prepared for the return to the hospital and the goodbyes. We weren’t yet sure what time we were due in and were assuming we’d need to leave around 07:00 or 08:00 am the following day. At around 13:30 we phone the hospital whilst tucking into our lunch - only to find that we had missed a voicemail telling us to be back by 12pm Monday (which had already passed). You have to laugh. We chuck the lunch down our necks, run around like headless chickens packing and jump in the car to drop Mummy and Louis back. On reflection, although we didn’t get as long as we had hoped, it didn’t give us time to think about it and removed the painful goodbye we would have had to go through before Isabelle having to go to school. Isabelle also got to come with us to the hospital so she saw where Louis was staying albeit only from the outside.

So there you have it…we managed to get home for 3 days. It was glorious. We’ll leave you on Tuesday 3rd November, the day after we get back to hospital and the start of the next cycle. November was an eventful month, probably to be covered in one blog – maybe even two.

Still with us?

Thanks for taking interest and staying with us. We value your messages of support and any feedback you provide. If there is anything we could do more / less of or you have any ideas to make this blog more interesting, please let us know.

Feel free to sign-up and get alerts, email us, leave comments – and please share. Until next time. #cancer #cancerblog #childhood cancer

Mummy's 'Shift'

Bye Bye Eyelashes

Out of Isolation

Amazing Isabelle

Daddy's Shift

On The Way Home

Reunited At Last (Isabelle Had No Idea)

The Fam

Magic Moments