Fast Forward

fixinglouis
May 24, 2021
4 min read

It’s May 2021 and over six months since the last treatment. There was a key milestone this week, so we thought we’d provide a quick update on Louis and his progress.

Last Update

We last posted in March and walked you through our exit from hospital in December and our adjustment period back at home.

At that point, Louis was being weened off his NG feeds and we were in the process of trying to bulk him up a bit. His hair had started to grow back and he had some MRI and ultrasound scans due on 12th March.

The scans in March showed Louis as being disease-free, which was great to know. It was a little strange being back in hospital after being there for 6 months and it was good to catch up with everyone who had looked after Louis. Most importantly for Louis, he got to eat donuts and various other treats as a form of compensation for being poked and prodded.

Today…23rd May 2021.

It felt poignant to write an update this week as Louis had his first full day back at nursery on Friday. He had his first taster for 2 hours on Tuesday, after which he came home and slept for a few hours. Wednesday and Thursday got progressively longer – but without the sleep.

So what’s happened since our March update:

Positive scan results from 12th March (see above).

No NG tube – just wholesome and normal food with some nutrition milkshakes to bulk him up. Louis was on the 95th percentile before treatment started and that’s where we need to try and return him. We say wholesome – he’s still a chicken nugget and chip fiend (but who isn’t at that age).

Louis’s hair has grown back even more. His hair is curly – but a lot darker than before he went into hospital.

Getting Louis to sleep is a lot easier. He was used to a parent being by his side for 6 months and lights being on at night. It took a while, but in April he finally started to settle himself.

The sleeping patterns finally settled too. Louis was waking multiple times a night – it was like having a newborn again. He generally sleeps until 6am/7am – and now he even stays in his room when he wakes early (most of the time).

He started eating the occasional vegetable outside of the potato family. He likes making us proud or to prove us wrong when egged-on – so various trickery has led to him eating a few sprouts, some peas and even cucumber as of yesterday. He always hated greens – even before treatment and in stark contrast to his sister. He also chose melon over chocolate cookie at lunchtime yesterday (how times change).

He had his childhood jabs again. We had to wait 6 months before he was able to have these – and whilst this was not the most pleasant experience (6 jabs in one session), it did mean he was able to return to pre-school.

Sadly it hasn’t been all positive steps. Louis had his first ophthalmology (eye) appointment in Brighton hospital in April. As you know the reason we realised something was wrong back in July last year was due to his eye and a sudden squint in his eye which was where the tumour placed a lot of pressure on the optic nerve. It looks like the damage is permanent and there doesn’t appear to be anything that can be done to address this in medical terms unlike other parts of the eye. His other eye did have pressure placed on it by the tumour but this eye looks ok for the time being. It is of course really sad that he has lost sight in his left eye and whilst many people have to live with eyesight challenges, you start to think about the impact it could have in terms of playing sport and other such things. It could have been a lot worse of course, so in some respects we are very grateful.

Signing Off for Now

In short, it’s been a positive few months for Louis. Working at home has been pretty challenging with Louis around and therefore being able to increase normality even further has been a really positive step. He is so happy to be back with his friends and it is really nice to hear how excited he is when he comes home, telling us the stories of what he got up to, what he ate, how someone took his toy and made him cry…the usual stuff.

His next scan is early June, so we hope to have something positive to report again soon. We will also provide an update on fund raising as a thank you is long overdue.

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The Earlier Days of Settling Back In (Not Much Hair, NG Tube Still In)