The Big C

fixinglouis
Sep 1, 2020
5 min read

The day we first confirmed the diagnosis that we never thought we’d receive and the week that followed…

Today is Sunday 19th July and it’s Uncle Mike’s birthday. Sadly we’re not in the mood for celebration. The first few photos in this blog show some false expectations: a few harmless bandages; Louis closely inspecting what he calls ‘Monster Crunch’ (a.k.a. Monster Munch) - just as you would expect from a connoisseur of the finest of baked maize treats; and lots of smiles. Louis is already getting a reputation for being a cheeky monkey with the nurses and also showing he won’t be taking this lying down having ripped out 7 cannulas from his hands and feet.

It’s mid-morning and with Mummy in person and Daddy via Zoom, we are told by our consultant that the biopsy will be taken tomorrow (Monday) – but that this will effectively confirm the inevitable….that Louis has cancer. It’s going to take 5 days (potentially 10+ if a ‘complex’ tumour) to confirm exactly what cancer this is and how advanced, so now we have an excruciating wait to find out what treatment we need. At the moment, a number of things are clear:

The tumour is behind the top of the nose (not the eye) and by default in close proximity to the brain. No evidence it’s reached the brain at present.

It’s growing fast (currently the size of an apricot).

It’s putting pressure on the optical nerve – both eyes (not just one). Risk that sight is lost in both eyes.

The growth is in the nasopharynx region (the average victim of nasopharynx cancer is a 50-year old male btw – with 50% survival rate after 5 years).

The decision is that we start treatment immediately as we cannot afford to wait 5-10+ days for the biopsy. We are told that the immediate priority is to save the eyesight (but quite frankly, the bit about it being near the brain and growing fast is kinda concerning us too). Needless to say this is the worst day of our collective lives so far.

Week 3: Calm before the storm

It’s Monday. Daddy is allowed to the hospital to spend time with Louis and Mummy and to get more time to discuss the diagnosis with the consultant. Cancer patient immunity is pretty rubbish at best but with the COVID-19 restrictions, we won’t be able to have people visit the hospital as you could pre-COVID. The irony here is that we lived in Southampton for over 25 years and have a huge network of friends and family here. Louis won’t be allowed out of hospital for at least 8 weeks – and when he does, it may only be for 1-2 days and may do more harm than good – for this reason, we wonder if he will actually be in for the full treatment period. This will no doubt become clearer when we know how well or how badly he handles his treatment, the amount of tests he needs as well as the tubes in his body that need to be maintained. The side effects of the treatment are long and harsh for anyone – let alone a 2-year old. The biopsy is taken and Daddy goes home to draft a weekly schedule to show treatments, hospital ‘shifts’, etc. Based on what we’ve been told around treatment cycles, it looks like we will be here until mid-January at least (this blog was written during July).

On Tuesday, Louis was due his first chemo but after some tests, it looks like he has not got enough fluids on board and chemo is delayed for a day. We’re a little nervous of any delay given the growth rate of the tumour and given we’re new to this process and blissfully unaware that delays will be inevitable on this journey as the body can take a long time to recover from each treatment. On Wednesday, chemo starts at 6am. Beyond that, pretty uneventful day. On Thursday, Louis is a little up-and-down. He’s on steroids, so has started to have mild ‘roid rage’ and feels a little nauseas. Still…this feels ok so far.

Friday 24th July – Diagnosis Day

The tension of waiting for the diagnosis is pretty tough and you think that once you confirm what you’re dealing with and have a plan that it will get better….but it didn’t feel that way (maybe reality biting). We’re given the (good?) news that Louis doesn’t have nasophlarynx cancer but instead has Non-Hodgkins Lymphoma (NHL). Apparently it’s a less-worse type of cancer with much better odds (now 75%). The kicker here is that because it’s Non-Hodgkins (vs Hodgkins), that we only have one shot to kill off the cancer.

The spread (and stage of cancer) can’t be confirmed – but it has breached the meningus (membrane that protects the brain and spine) – and it may have therefore got into the spinal fluid and spread. Given this possibility and also the fact we have one shot, it is being treated as stage 4 for the time being – maybe overkill but maybe just appropriate. Louis will be given a shorter but more intense treatment. This is still going to be a long slog.

Practicalities

It’s at this point that we start to think about some of the ‘practicalities’ of this journey – all to be shaped by how well Louis reacts to treatment and how we need to respond to COVID-19. It looks like Isabelle will not see (or hug) Louis for the majority of the next 6 months. Daddy will snatch a few hours with Isabelle on her birthday before handing over to Mummy. We’re not clear at this point whether we get a few days or a week/weeks at home during the treatment - but this could mean that Louis and Mummy will miss Daddy’s birthday in October, Isabelle and either Mummy/Daddy may miss Louis’ birthday in December as well as Christmas, Boxing Day and New Year (I think we’ll be too exhausted to do anything NYE anyway). For the foreseeable future and possibly the majority of the 6 months, Mummy and Daddy will only see each other for 30-60 minutes a week for the next 6 months, keeping in touch via video call – but this may improve if he can come home for longer periods.

Did we mention Mummy finishes work next week and will start a new job the following? And it’s Daddy’s busiest period at work between July and September. We are lucky to work with some awesome people. Flowers arrived from Daddy’s work within hours of them hearing about Louis. Mummy’s team were incredible and despite the fact that she was supposed to be closing everything down ready to handover everything, they removed the stress by putting her on compassionate leave so she could support and care for Louis. They also sent an amazing video to say goodbye and to send their love and support to us (which you can see below). It came at just the right time and gave the boost mummy needed to start her new job. Mummy’s new work colleagues have also been amazing and very understanding of the situation. Right from the get-go, Mummy had lovely messages from the team offering prayers and support which has been incredibly humbling. Mummy and Daddy feel very lucky.

Another reality is that we need to explain the situation to Isabelle, so we drafted a script to explain what was going on – but how do you explain to a 5 year old child that their little 2 year old brother has cancer? Our next blog will outline this conversation and we have more in the pipeline including more detail on our settling-in period.

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