Deuxième Cycle

Couldn't think of a cool blog title this time, so simply translated to French for effect. For those of you that weren’t listening in French class, this blog is about the second cycle.

The Treatment

Sorry it’s been a while. October was a crazy month for many reasons (but that’s for about 2 blog’s time). You may remember that the last blog was all about our first experience in terms of the impact the treatment would have on Louis. Unfortunately, it gets worse (a lot worse).

It’s difficult to find the right words to describe what happens in this period – but the photos will help. In fact, you may not want to look at some of the photos – but we included some pretty uncomfortable ones. When many of us think about cancer, we think about bed rest, sickness and hair loss with some pain thrown in – but this has taught us that there can be more – could be less and a lot worse….as many of us parents in the cancer ward say, everyone is on their own journey and it’s not one size fits all. Some kids are on chemo, some get proton beam therapy, some get injections, some get surgery, some are in for a few days for a treatment and some are in many months – and the side effects and long term impact is just as variable.

To recap, Louis had his first treatment on 22nd July and his second on 4th August and you’ll have seen the first part of this period in the last blog. It’s now 9th August and we’ll take you to the start of September when the troisième cycle (that’s French for third cycle) starts. The chemo mix and recovery periods vary by treatment. For Louis, the second and third are the harshest – but he also had quite a heavy first cycle because at that point, we had not confirmed the cancer type. If following the protocol to the book, he’d have had a 2-week gap between cycles 1-2 and 3 weeks between cycles 2-3. He actually had an extra week with the first cycle due to it being a bit heavier than needed – plus we had to allow for a catch up on some of the chemicals not administered.

If you did the math on the timeframe of this blog, you’ll see he had an extra week on the second cycle recovery too (we actually have bigger delays on the third). This is really worrying for us all as delays mean we are not keeping on top of the disease and ideally Louis should have all seven cycles within a set period of time. We should say however, that it is normal for delays and although we have a set protocol, the ward have never seen a treatment of this type finish on time and despite everyone saying how robust kids are, this is a very young age to receive such as harsh treatment…and as a parent, these delays play heavily on your mind.

No pleasure without pain (and we can confirm there is no pleasure with pain either)

Mummy currently has the baton following a handover on Saturday 8th – and normal service is resumed. Louis has started to get an itchy scalp, which gets added the list of ailments; currently including hair loss, mouth ulcers, tummy ache, fever and temperature. Louis is running with two infections – one unknown but originating in one of the lines that administer drugs into his body. Another is C Difficile – a bacteria of the gut, which means we’re now in isolation. This isolation is different to the COVID version in that we are allowed out of the ward – but we are not allowed into the ward’s shared facilities, i.e. kitchen, playroom, etc. as the risk is that we pass the bacteria to vulnerable kids. It’s a rough weekend sleep-wise with lots of pre-alarms, alarms, drip changes and flushes (saline to flush the tubes after each drip finishes) plus obs (which you now know is observations), followed by pre-alarms, alarms, drip changes, flushes and obs. Repeat, repeat.

Monday arrives and Louis is having another blood transfusion. This time however, he has gone floppy, sweaty, has cold legs and is sleeping with his eyes open. He becomes non-responsive and the transfusion is stopped. Heart rate and temperature plus sign of a rash (which he already had) are looked for. It is believed this was a reaction to a number of medicines that have sleepy side effects and morphine given at the same time. Needless to say this leaves Mummy very shaken. As we find with this whole experience, he can be one way one minute and another way the next – he later transforms and even asks for crisps and donuts but after a small bite cries in pain and gives up. Louis is due another intrathecal / lumbar puncture treatment but is way too sick at the moment, constantly having fever, unable to eat, lethargic and in pain. The decision is taken to put off any further intrathecal treatment until his next main chemo. Tuesday doesn’t get much better. Louis starts to throw up blood and flehm. Not sure whether this was due to a nosebleed – more likely this was from the tummy as a result of the mucositis (sores/ulcers) that were spreading to his insides and must be incredibly painful, which would explain the tummy ache.

Words don’t do it justice…..Louis is really sick at the moment. It feels like rock bottom but it isn’t yet.

The Rollercoaster

Going up…..A bit of positive news on Wednesday. Our consultant confirms that the type of non-Hodgkins Lymphoma (NHL) that Louis has is Burkitt’s – apparently one of the less-worse NHL’s. It also means that the treatment can change slightly as it is clear to all at this point that he is already struggling. Also, Mummy is allowed out of isolation on the basis he hasn’t been for a number two for a while, meaning we’re not in contact with C Diff.

Down a bit…..Approaching Day 10 of the second cycle and Louis has visible ulcers all over his lips as well as inside the mouth and whilst not visible, we believe to be going through to his tummy – but not yet out the other end. We hope this will be the worst of it given we are halfway through the cycle and that he will start to recover so that come Day 21, he is fit for the next cycle. Happy times with Louis are far-and-few between. Mummy gets an occasional respite with Louis happy and talking but at the flip of a switch, she is wrestling with him to stop him pulling the wires out from the side of his abdomen. His painkillers continue to be increased. To top it all off, Louis is still suffering with mucusitis and coupled with sickness, Mummy is woken up in the early hours with the sound of retching only to find him in a pool of blood filled sick and his NG tube coming out of mouth – needless to say it was like a scene out of a gory horror movie.

Down a bit more…..As we pass the halfway mark of this cycle, his infection markers are still not improving despite multiple courses of antibiotics, which would hopefully have done the job by now. What’s going on? He’s been having blood samples taken since the treatment began and the infection still can’t be identified. It’s subsequently discovered that he has a yeast infection in his line, so a different course of antibiotics is drawn up. If this doesn’t work, the line will need to be taken out, followed by a 5-day wait before adding a new one, which would delay his next treatment. Saying that, it looks like a delay is inevitable as he’s just not fit enough.

Another dip…..As a result of the pain, infection and fever, Louis has been unable to eat for weeks – and the same goes for drinking water and cleaning his teeth. It is impossible to explain to a 2-year old that they should try and swill their mouth with water to moisten it and to use cream to help manage the sores. His mouth is in a pretty bad state by now. Daddy had attempted to use sponges on a stick to wash Louis’ mouth out during his last stint - but it wasn’t a battle that he was going to win. Louis affectionately calls these things ‘crunchy lollipops’. However, it’s now at the point where something needs to be done. Before handing the baton back to Daddy, Mummy gets the pleasure of seeing the crunchy lollipops in action, which leads to what looks like half of an inner cheek leaving Louis’s mouth. This is possibly matched on Monday after several early hour wake-ups and a missed alarm that results in an 0940 wake up, Daddy is presented with a 6-inch length of skin (or maybe it was a sausage casing) served with lashings of blood. We are really living the dream.

Down still…..It’s Tuesday 18th and Daddy is back in isolation. After 2 weeks without a No.2, Louis squeezes out three in quick succession and because the anti-biotics haven’t finished, the risk of spreading C-Difficile remains (good job Deliveroo is available in Southampton).

Down through the tunnel…..Time for a new side effect caused by the pain…..tooth crunching. Clearly, Louis is the one suffering here – but as a parent, seeing the sores, blood and fevers have been truly awful – but this takes it to a new level. It is literally like listening to someone crunching boiled sweets and could easily replace thumbscrews and racks as a medieval torture technique. The damage he must be doing to his teeth is unfathomable. You find yourself clenching your own teeth – imagine someone scratching a blackboard and multiply many times over and you’re still not close.

Through an inclined loop…..Come Wednesday 19th, it looks like we’ve turned a corner with two temperature readings under 37 degrees. Nope – spoke too soon, next one is over 39 degrees, lumbar puncture for Thursday now cancelled and tooth crunching continues.

Here comes a corkscrew…..Thursday is Day 14 of Louis having C- Diff and it means Daddy can come out of isolation, yippee. Louis has had a temperature for two weeks now and every time it looks like it’s dropping, it rages back. His mouth has started to look better over the last two days but still won’t allow anyone to wet it with water or cream. The temperature teased us yesterday but maybe a sign of better times? NO! Daddy lets Louis sleep until 11am as he clearly needs the rest but when he wakes up and Daddy goes to change his nappy, Louis starts to scream the place down. Worse still, Louis’s lips have merged with his teeth and when he opens his mouth, all you see is a skin membrane (comparable to someone blowing bubble gum – but just using his own gum instead). This then leads to the ripping of lip and a bleeding mouth so whilst Daddy reaches for a nappy, Louis pees everywhere and follows up with a blood vomit just for good measure. We decide it’s time to crack open the crunchy lollipops. What happened next was probably one of the more traumatic experiences in our time here. Pinning Louis down whilst he is given mouth care, trying to wet the lips with a crunchy lolly and water so that you could tease the skin off the lips. It was literally a blood bath with Daddy and the bed covered in blood.

Here comes a lift-hill (getting fed up of trying to google things that obviously sound like rollercoaster parts now)…..It’s Friday 21st and although we’ve been up since 2am, it’s the first time in two weeks that we’ve had no temperature spike in the night. The white blood cells are also at a level that the body can start to recover itself. Come Saturday, handover is complete, Daddy goes out for a socially-distanced curry with Uncle Stu and both are hit with food poisoning. Mummy gets to enjoy the last pizza night put on by Abby’s Heroes given we’re out of the peak Covid period (for the moment) and gets to enjoy tooth crunching for the first time.

Are we there yet?

The third cycle is supposed to start on Tuesday – 2 days away. Louis is nowhere near fit enough. The decision is taken to give Louis the gentle components (maintenance dose) of the chemo to tie him over, to be followed up in around 12 days by a full blown treatment. Louis attempts to eat a biscuit after dipping in milk – his first attempt at trying food in a few weeks – but it hurts too much. It’s a shame as it’s clear he is desperate to eat something.

Come midweek, Louis is well into his maintenance dose and steroids. He’s had over 12 packets of crisps opened for him plus meals and snacks served – but still nothing is going near the mouth (but at least the desire to play and eat with food is there). Unfortunately, the roid rage is back, pushing Mummy to the brink with nappies being ripped off and thrown through the air.

Worryingly, we are told that in some cases, kids don’t eat for the full treatment (which for us is looking to be February 2021). This would mean relying on being fed by drip and eventually teaching them to eat again. Given he will be having his treatment next week and hasn’t eaten, this isn’t looking good. If it takes a good 3 weeks to recover from his third cycle (if not more) and you add this to the current four week period without solids, it is going to be difficult to get him back into food.

Happy Birthday and Bank Hell-iday

Its Saturday 29th August…Isabelle’s 6th birthday and it’s days like this, when being apart as a family, that life really sucks. The plan is for Daddy to try and get to the hospital early enough for Mummy to get back home in the afternoon and spend time with Isabelle, Uncle Stu, Auntie Emma and cousins Emilia and Sonny to celebrate.

Daddy makes some birthday pancakes for Isabelle – mainly because Isabelle had previously said Mummy’s pancakes were better and he needed to put the record straight (which he does). Isabelle gets to open two presents with Daddy, but then it’s time to get going. Isabelle is dropped off at Uncle Stu and Auntie Emma’s and off goes Daddy to swap with Mummy.

Unfortunately, it’s a bank holiday and traffic is awful. Daddy takes ages getting to the hospital and despite a limited handover, it’s early evening before Mummy gets back. Thankfully family come to the rescue and Isabelle had a wonderful day with them all (thank you guys!) – but it would have been nice for Mummy and Daddy to get some quality time with her too. Luckily Isabelle has a party with a few friends from her class bubble on Sunday and everyone gets to laugh at the two cakes that Daddy has made. One was supposed to be a 3D unicorn head cake, which was spray painted but looks more like a comedy Halloween horse head with a long snout. The second is a unicorn themed 5-tier rainbow sponge with buttercream icing and a hollow centre filled with M&Ms. This cake actually looked ok until the eyelashes were painted onto the cake the wrong way and looked like a frown. Maybe Daddy will redeem himself with the dinosaur cake requested for Louis’s birthday.

Finally!

Louis finally eats solids for the first time in 4 weeks. He celebrates with that all-time British classic……chips dipped in ice cream. He’s in great spirits and despite the lack of hair and various tubes, he is back to being that cheeky monkey we all know and love. We even get treated to a new phrase….when Daddy was checking for sores around the groin, Louis suddenly jumps up and shouts “hey, that’s my ball bag”. We won’t say where he got that phrase from. It’s probably co-incidental that it was around the same time that Louis started to hone his pranking skills with a new mealtime routine called ‘smell my lid’, which consists of ‘tricking’ Daddy to smell his ice cream lid and then whacking the ice cream in his face. Daddy was hoping Louis would catch Mummy with this trick but Louis plain refuses – this is reserved for Daddy only.

Louis continues his food frenzy, scoffing pancakes and more. He gradually builds up until we reach 1st September when he finally starts his third cycle.

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Sad Louis

Birthday Girl

This Cycle's Path to Recovery

Chips and Ice Cream

Smell My Lid