To The Brink (Part 2)

Following the last ill-fated home visit, this second instalment picks up with Louis having now spent 10 days either being sick or sleeping and not much else. This blog will cover our darkest hours and days so far – and hopefully we never have to face anything like this again.

Sorry It's Been A While

We weren't intending to have a 1-month break in the blog - but since the first part of this bit of the story, we've had Christmas and the distraction of home-schooling at courtesy of Covid. Anyway, back to the story....

Total Wipeout

It’s Saturday 21st November. Daddy is back in the hospital and back in Covid confinement until the new test comes back negative. As we enter early evening, Louis has another ultrasound and there is talk of a trip to PICU (Paediatric Intensive Care Unit). In PICU, Louis would have one-to-one (or even two-to-one) supervision 24/7 – and that means that he can be given larger quantities of drugs and access to a wider range of medical interventions than on Piam Brown. This would hopefully get the infection under control, although the main area of concern at the moment seems to be low potassium levels. Members of the PICU team come up to assess Louis and they replace his oxygen mask with tubes that pump oxygen up the nose. They also talk about getting somewhere for Daddy to sleep because whilst you can come-and-go as you please, you cannot sleep on PICU.

As the night progresses, the visit to PICU is looking less likely as there is an emergency to deal with – but they may send someone from PICU up to stay on Piam Brown. It goes silent but Daddy stays up for a while just in case – and as it approaches midnight, Daddy decides to settle down for the night.

Just before he settles down, we get news that PICU is back on. The ultrasound has shown inflammation (as they would expect) – but it has changed a lot since an ultrasound the day before and there concern that it could perforate, which would cause the contents of his bowels to enter the bloodstream. Also, the ‘good’ eye, which was less impacted by the tumour has become inflamed. It sounds like we will be in PICU for a few days. It gets to 1am and it doesn’t look like Louis is in immediate danger but he has an inflamed gut, is unable to absorb potassium and has low oxygen levels in addition to whatever infection this is.

Clinically he doesn’t need to be in PICU yet but it’s inevitable he will get here so they want to get ahead of this as opposed to wait for him to go further downhill. By 2am, it’s time for Daddy to go back upstairs as no beds are available across the hallway yet. The plan is to grab 5 hours of sleep but it doesn’t really happen.

It’s Getting A Bit Intense

It’s 8am on Sunday and Daddy gets to PICU with green tea in-hand (Daddy hates to spend a morning without one). Sadly, Daddy has not noticed the rules (written in big writing, on a big poster, stuck outside both entrances to PICU) and gets told by the nurses he can't drink his beloved morning beverage on the ward. Covid also means that in addition to wearing a face mask 100% of time (as the amazing NHS have to all of the time btw), no one is allowed food or drink on the ward as this would mean removing the mask.

Daddy gets to understand a bit more what is going on with Louis and the talk this morning is of multi-resistant sepsis – which gets added to the ESBL and C-Diff he already has. He is stable and we are told that the sepsis isn’t life-threatening – but he is really struggling to open his eyes and mumbling that his tummy hurts.

It gets to 10am and Daddy really needs to get a green tea now. He gets taken across the hallway to the PICU parent’s room but can’t see the kettle. Daddy’s confused face is taken as nervousness by another couple who are in the room but they tell him it’s fine for him to join them. Daddy thanks them and goes to find the kitchen before returning to them. After a few mins, the lady tells Daddy that there may be a bit of crying but it’s fine to stay. It’s at that point the penny drops that the family didn’t think Daddy was nervous – they were sending subliminal messages that they had just received some bad news. The offer to depart is provided but Daddy is told it’s fine. We strike up a conversation and it turns out that they are the grandparents of a child who just passed away on PICU from a brain tumour. It was very sudden and the parents are just saying their goodbyes and will be joining shortly. Daddy spends a few silent minutes in the room to avoid the family feeling awkward about kicking him out before making a tactical withdrawal from the room, telling them they should have their space to grieve in private and he was sorry for their loss….removing his foot from his mouth on the way out.

Back in PICU, Louis is watching Peppa with one eye, barely open. The lines that go into Louis’s chest which are used administer drugs (including the chemo) have been found as one of the infection sources and will be taken out for a while until the infection subsides. Also, the antibiotics are being changed again – unfortunately with ESBL, it can mean that your body can be resistant to some drugs which means it can be harder to treat the condition. However, it looks like we may be closer to knowing what’s happening but definitely not out of the woods just yet. The new concern is that this could delay his treatment given he is due treatment this week and not expecting to be ready for another cycle for another 2-3 weeks. Louis is only supposed to have 4 week gaps between these cycles for the treatment to be effective. How will this impact the cancer?

Au Revoir Little Man

Later in the afternoon, Louis is put to sleep to have his line out. He has an MRI booked for Monday, so they decide to keep him heavily sedated as opposed to bringing him around. This will give the antibiotics time to take effect and hopefully help the inflammation go down. As he closes his eyes, he manages to look at Daddy. He looks completely done-in, his eyes show what appear to be resignation, defeat and complete helplessness. It's going to be hard not being able to have any interaction with him but on the plus side, his blood pressure is now on the lower side rather than sky high as it had been previously.

It’s the morning of Monday 23rd and Louis now has a line in his arm to give him the drugs he needs now the line from his chest has been removed. His heart rate and blood pressure are under control through drugs and a cooling blanket. He is on a ventilator. His tummy is more inflamed however – visibly so. His liver is apparently also inflamed. It could be that he has other infections, it could be that the antibiotics need to be adjusted or it could be that the chemo has had a side effect on the liver. More scans are ordered to see what’s going on and to rule out the worst-case scenarios in relation to chemo and the rarer side effects it can have on the liver. One thing is clear – no one wants to open him up in theatre and look at the inflated tummy as his body will struggle to recover from this given he has no white blood cells and needing frequent platelets (yellow blood cells – which are required for blood to clot).

Come the afternoon, Louis’s tummy has continued to inflate at an alarming rate. The ultrasound show he has what is referred to as ‘complicated fluid’. Either the inflammation is resulting in fluid release or the bowel has perforated and his bowel contents are going into the blood stream. On top of this, the antibiotics do not seem to be doing anything. On the basis of this and the rapidly inflating belly, the PICU team are reluctantly recommending Louis be opened up before it gets worse. The plan is to make a small incision to investigate – and in normal circumstances, should they find an issue, they would patch the gut up and/or remove a piece of the bowel and reconnect it. If they find issues in Louis, they won’t be able to patch him up or cut/reconnect the bowels as he would not heal, meaning he would have something similar to a colostomy bag for the remainder of his treatment – and once the chemo is complete and his body has the ability to recover, everything would be reconnected. Of course there are plenty of risks in this operation, but we need to understand what is going on first. Louis is taken off to theatre pretty quickly thereafter.

In the meantime, the room on Piam Brown was needed, so Daddy has moved to a room for PICU parents across the hallway. Being a bit spaced out, Daddy leaves the key in the front of the door and to his horror, is unable to open the door from the inside??? Daddy calls PICU ward and sheepishly asks for someone to come and rescue him.

Our Darkest Hour

After a 3 hour wait, Daddy gets the call to come and see Louis, who is now back from theatre. To occupy himself, he takes his latest book about a hitman across. He briefly thinks about cracking a joke that it’s his autobiography and that he hoped the surgeon had good news for his own sake - but thinks twice. Good job he passes on the joke because Louis is in trouble…REALLY BIG trouble.

The surgeon was not expecting to see what he did. Louis has a damaged gut – and there is a piece that measures 55cm looking pale and in a very bad state. It’s very possible that this bit of gut may die – but that is ok in itself as it can be removed and re-connected to the remaining healthy part of the gut as previously explained. This would mean Louis cannot be patched up until after the chemo finishes, would have a colostomy bag and would become a permanent resident to Piam Brown ward for the rest of his treatment. Also, there are multiple risks and complications here – but let’s park that for a second because this isn’t the bad bit.

The real kicker is that the gut is damaged as high as can be seen. To see further up would require various parts to be lifted out of the body and put back in place – and this could cause further damage to a part of the body that may in fact be healthy. There is a part of the gut which controls the pancreas and liver. If this is damaged, it cannot be replaced. There is an extremely dangerous and risky operation that has limited success for even a healthy patient – and Louis is not in that category. In short, if this part of the gut dies, Louis dies. It is very plausible that this part of the gut is damaged as badly as the part that could be seen and there is significant risk it will die as it looked in a desperately bad way. This is not one of those small print, unlikely scenarios – it is very real. We are told to prepare ourselves for the worst and that Mummy should come and join Daddy at Louis’s bedside. He will stay asleep and if the worst happens, it looks unlikely we will be able to look him in the eye and say goodbye. Daddy’s recalls the look of desperation in Louis’s eyes when put to sleep the previous day. Hideous, just hideous.

Louis’s tummy is left open so that he can return to theatre in 48 hours for another look. It’s possible the gut will show no sign of either improvement or worsening at this point and we will end up repeating this process every 48 hours. Daddy asks the surgeon to help explain this over a video call to Mummy. The call starts with Mummy being jovial and cracking a few funnies about Daddy getting locked in his room, unaware that the surgeon is next to Daddy. Mummy is asked to go to a room away from Isabelle and the news is broken. Mummy now needs to try and hold it together as she packs Isabelle off to her Uncle and Aunties without causing alarm – and also to drive 90 agonising minutes to Southampton without crashing or being caught speeding (which obviously she does not do should this be being read by esteemed members of the policing community). Mummy arrives a little after 9pm, where she is very overwhelmed of the scene that is before her. The nurse also confirmed that the number of machines and drugs connected to Louis is a record for her. Luckily a couple of the nurses from Piam Brown ward had come down after the day shift to see Louis just before Mummy arrived so was perfect timing to be of comfort. After the initial shock, Mummy gets her big girl pants on once again and spends a few hours with Daddy, watching over Louis before going across the hallway to attempt to sleep. Not!

The Morning After

It’s Tuesday morning and Louis is stable but has kept the PICU nurses on their feet as you’d expect after an operation. Interestingly, his neutrophils (white blood cells) appear to have increased very slightly despite being zero for two weeks. Although the surgeon had planned to re-investigate Louis’s intestine after 48hrs, they decide to give it a bit longer to give his body more time to recover. The wait will be longer and the situation is critical.

In the meantime, Isabelle is having a great time with her cousins, blissfully unaware of what is going on. Of course, Mummy and Daddy are beginning to wonder if they will need to break the news of Louis’s situation soon should it get any worse – and how they will do this? You know people will be telling you to keep positive but it’s very difficult not to start thinking about funerals and how this could impact Isabelle and will it make her stronger or will it break her and cause her to go off the rails in later life. How long will we keep Louis’ room untouched? Daddy decides not to lose his humour in this situation – and whilst he holds back from exchanging memes with friends, when his Mother-in-Law says she has been encouraging Auntie Emma to show pictures of her as a kid, Daddy explains you cannot take them to visit cave paintings at the moment due to Covid. Daddy thinks he is probably safe from repercussions at present as technology does not yet have the capability to provide ‘virtual clips around the ear’.

Waiting Game

The next few days go slowly. Mummy and Daddy have been relocated to Ronald McDonald House, which is essentially hotel-standard (self-catering) accommodation onsite at the hospital. There are a number of these facilities around the country and these are paid for by the coins (and maybe notes) added to those collection boxes in McDonalds restaurants – and no doubt added to by other direct donations. These collection boxes certainly won’t go unnoticed by us anymore.

The routine during these few days tends to be a 0630 wake up, in PICU by 0730 to catch up with the nurses from night shift before their handover at 0815. Mummy and Daddy would hang around until 0900 because some of the amazing nurses from Piam Brown would come down after their night shift to check-in on Louis. After breakfast, we held our vigil to around 1pm before grabbing lunch at M&S, maybe doing some washing or eating in the PICU parent’s room to catch up with the family via video call. Dinner would be about 1900 before returning to PICU until sometime between 2200/2300, which would be followed by a hot chocolate at Costa and a reflection on the day’s events – the highlights usually being an increase in white blood cells – slowly at first, but getting progressively better – as well as potassium levels holding, heart rate and blood pressure stable – but with all sorts of odd fluctuations during the day and night.

As we approached the 72-hour mark, Louis now has puss leaking out of his ear and a very strange cyst on his bottom eyelid, resulting in a sore looking eye – the good eye that had been impacted by the tumour to a lesser extent. Whilst the bloods were going in the right direction and provided hope, it can also mean issues start to arise as his body kicks into action to fight infection itself – including an acceleration of his gut issues. The worst part in Daddy’s mind however was the fluid retention. He is being pumped full of fluid and there is a reluctance to give him anything that allows him to excrete the fluid – mainly due to the risk that his potassium levels decrease again. Although Louis is being moved from side to back to side every few hours, gravity has taken effect. On top of the catheter, Louis is competing for a world record that some men would be envious of – but there is a trade-off…..his man parts are now comparable to one of those animals that clowns make from balloons…….and has been in the ring for 12 rounds with Mike Tyson. Daddy can’t look and spends a lot of this period with crossed legs. To help mitigate this, Louis is given a ‘ball shelf’ – a simple but effective use of towels to prop his bits up and hopefully redirect the fluid somewhere less extreme. We can imagine the teenage Louis bragging to his mates that his man parts were so big he needed a shelf on which to store them. If he gets through this.

Good news?

It’s 26th November and Louis goes into theatre – it’s a long and agonising wait. Mummy and Daddy occupy themselves at Ronald McDonald House, grabbing lunch and doing some chores. As we tuck into our lunch, we get a missed call and a message saying he is back but not to come straight back as there are an army of people getting him comfortable, reconnecting him from mobile monitors and the machines administering drugs to the PICU kit. Then another call. It’s the consultant, who has been liaising with Mummy and Daddy from the moment he had his initial investigation. He breaks the news to Mummy and Daddy that he is made-up, it's good news and he wanted us to know immediately. Louis’s gut has started to heal. It’s still in a bad state but he is going to be ok and therefore he felt comfortable to sew him back up. A huge sense of relief washes over us, our little man is going to be OK for now – but we are of course very aware that this is a battle – and the war has not yet been won. He is going to take time to recover and he should have been having treatment this week. What will this mean?

As we know from this journey, when there are positives, there are usually some negatives. The negative on this occasion was the passing away of Nicki’s Uncle Alistair, who people may remember as the Sargent Major in the series Bad Lads Army on ITV. He had been admitted to hospital a few weeks earlier with Covid and showing signs of recovery, when it suddenly took a turn for the worst. A lovely man taken far too soon and a real eye-opener to just how serious this virus can be. Stay safe!

The Awakening

The following day, Louis is gradually woken and the ventilator tubes removed from his throat which is not the nicest thing to witness at all but at the same time very emotional and happy to see him open his eyes again. He flutters in and out of consciousness and in no position to rip out the multitude of wires in or around his body – let’s just hope he doesn’t look downstairs! He manages to muster a tear and starts to move a disapproving arm each time someone goes to touch his wires or add ointment to his eyes. The fighting spirit of our little Louis is definitely back.

It’s Friday 27th November and the end of this blog. Next time we will cover the transition out of PICU, the implications of these latest events on Louis’s treatment – and of course some positive events – Louis’s 3rd birthday and the lead up to Christmas.

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

Pre-PICU

PICU

Still in PICU - There's A Lot of Machines....

Coming Around After The Big Scare