Ciao For Now

The 14-day countdown which saw Louis start his transition away from being a care-free, happy child with a full set of hair to a childhood cancer patient…

Day -14: Our typical everyday Louis is cheeky chappy. In the last video we have of Louis before the journey starts (above), he is trialling his ‘trumpy’ (whoopee) cushion.

Day 0: The start of the intermittent eye pain. Louis grabs his eye a few times over the next few days. Then a period of being inconsolable. We call 111 and advised to book an appointment for the Monday.

Day 2: Monday arrives and Louis seems absolutely fine so we don't book an appointment as we don't want to waste anyone's time given Covid-19. He has a great week at nursery, eating all his meals (mostly) and playing with his friends.

Day 9: We have friends over for dinner, Louis complains of eye pain again and off his food. He is once again inconsolable. Maybe it wasn’t potato in the eye from dinner that evening – maybe he isn’t being a drama queen? We decide to monitor over the weekend and maybe book a GP appointment the following Monday.

Day 10: Sunday morning, feeling a little delicate after lovely evening with friends. Nicki gets up with the kids and over the table asks Louis what he wants for breakfast when she noticed that he had developed a sudden squint. We ask our friends and grandparents who also agree so we book a GP appointment. Keep calm, carry on.

Day 11: Eye still has a squint. Mummy thinks it’s bulging slightly. We see the GP and he confirms that squints are not uncommon, that they are fixable but also that it was slightly odd to have appeared as quick as it did and not a little earlier in life. As a precaution, we are referred to local outpatient hospital with an eye unit as a precaution. Still not overly worried.

Day 12 and 13: Squint gets progressively worse and when we pick up Louis from nursery, it’s a real eye opener (pun not intended – but we’ll claim it). Getting a bit concerned (but only a bit).

Day 13: Eye specialist does a few tests and they are concerned enough to refer Louis to a larger local hospital (Worthing) for a CT scan. Mummy and Daddy are called into a room….blinds are pulled down, nurse gripping the chair slightly uncomfortably, doctor looks at ground before talking….body language suggests bad news coming. We are told it’s a mass behind the eye. We are a bit more concerned – but still convinced it’s inflammation or worst case a benign lump…the worry is about long lasting eye damage. We are referred to Southampton General Hospital with contact expected within 1-5 days…depends how concerned they are or maybe we are ‘lucky’ and they may have spare slots and able to get us in quicker.

Day 14: It’s the morning of Friday 17th July 2020. We get a call first thing and told to get to Southampton for 1pm and pack for a few days….still fairly sure it’s down to them having a slot….but a bit of doubt creeping in now.

Calm before the storm

Strange few hours. Despite the brain saying nothing was wrong, deep in the gut, it felt like the next few hours needed to be put to good use (just in case the unlikely happened). Louis played catch in the garden – taking great pleasure in trying to decapitate us with his outrageously accurate throw. We built the marble run, did a few rounds of the Baby Shark song and also snuck in some sofa jumping as you can see from these last few photos/videos.

Time to go….why doesn’t this feel like it’s a flying visit to the hospital?

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