A legacy for Louis – 12.7.03- 21.4.08
Ruth: “Louis’ death was just awful. I suppose I’d hoped that, because the prediction with a brain tumour is often that you’re going to sink into a deep sleep, that he would die in his sleep. But he didn’t and the last two hours of his life were just unspeakable.”
Ruth: “Louis was loveable, but not in a sweet way, not in a sickly way. In a kind of cheeky, naughty and something much deeper way.”
Alfie (Louis’ brother): “He would always dress up in a red costume that looked like a Power Ranger and then he would always put me in the Spongebob outfit.”
Bruce: “He had that sort of magic that just meant you felt really good. And I have to say it wasn’t to everybody – if he didn’t want to love you he didn’t.
"Louis had a spark about him despite really being quite ill from birth.”
Ruth: “You know, Louis in his life before the diagnosis had seen four paediatricians and nobody had ever solved the problem. So they’d ameliorated the symptoms but the problem hadn’t gone away.”
Bruce: “Ruth always picked up that there was something wrong. She was very perceptive like that. But he fell over one day, which he sort of didn’t normally do, and she was even more convinced then that there was something seriously wrong. So literally she went to St Thomas Hospital to the A&E department and said, ‘my son’s fallen over’, you know, ‘he had a blackout’, which wasn’t quite true but was very nearly the truth, and that made them do a scan.”
Ruth: “They took Bruce and me into this little room and they said, ‘there’s this mass on your child’s brain and it means one of two things. It either means there’s a bleed or it means there’s something else, which is worse’, and I said, ‘what is that something else’, and she said, ‘it could be a tumour’, and I said to this lady, ‘what do you think it is?’, and she said, ‘I don’t think it’s a bleed’. And that was the beginning of the nightmare."
Moving to Palliative Care
Ruth: “When we knew that the treatment hadn’t worked and we sat down with our oncologist and we decided to do no more treatment, from that moment on Louis officially was transferred to the Palliative Care team.”
Maggie Comac, Paediatric Palliative Care Nurse at GOSH: “Our philosophy in paediatric palliative care is that it’s not about end-of-life symptoms. Yes that is a part of what we do and it’s a very important part, but it’s very much talking to families about maintaining and achieving a good quality of life and what the child can do.”
Bruce: “We made Maggie forcibly swear that she would one, make sure Louis stayed at home if humanly possible because we had no idea what sort of treatment he would be going through. We needed him to be at home with us, we felt that was how we wanted to spend the last few weeks with our child. Actually, he lived on for six months again showing his courage, I think, and strength and determination. And secondly that he wasn’t in pain at any point.”
Maggie: “I really got a feel that Louis was happiest at home with Ruth, Bruce, Alfie, the visitors that they had, watching TV, playing games. We can’t replicate that in hospital sadly.”
Ruth: “I’d no idea that we were just completely lucky that we ended up in a hospital where this service was available. It is not widely available at all. The idea that you would get through the night with a pain breakthrough and not being able to call somebody, for me it makes me feel nervous just to think about it now.
“This isn’t a headache. This is a child who’s dying of a brain tumour whose symptoms include everything from paralysis, blindness, itching, nausea, vomiting, hallucinations regularly from different drugs and you’re meant to be able to cope with that on your own? It’s just not possible. So from that respect I realised that there was something seriously special here.”
Managing the symptoms
Dr Finella Craig, Paediatric Palliative Care Consultant at GOSH: “Louis’ symptom management was very complex. He was – it was very tricky to symptom manage I think because his disease progressed fairly slowly and he got nasty, nasty pain from it.”
Bruce: “Really the entire of Louis’ care from that point on was trial and error. Palliative care for adults is fairly well documented but for children it really isn’t and we were completely shocked that there wasn’t an immediate, sort of, way of going forward that would be quite obvious.
“Unfortunately, the pain beat even Great Ormond Street sometimes, but we got on top of it normally after an hour or two.”
Dr Craig: “You know we’ve got an idea of what drugs are available but you’re choosing something based on your intuition and you’re hoping to goodness that the drug you’ve picked to try first is the drug that’s going to work.
“Until there are enough studies of how drugs work in children, we’re going on guess work.”
Ruth: “I find watching anybody’s child really vulnerable and in pain distressing but when it’s your own you feel murderous. It’s a fundamental – the worst feeling as a parent. I really believe I can get over his death, I just can’t get over his pain.”
A memorial to Louis
Bruce: “Children will go on dying round the world, they will be sent home from hospitals all around the world, which is happening today, having had all the treatment the hospitals can give but there’s nothing more that can be done for those children. They are sent home and they at the moment do not have information to be able to treat them for those last few days, weeks or even years of their life. And that is not, in this day and age, acceptable.”
Dr Craig: “One of the most important things I think is providing an evidence-based research centre so that we can actually work out what drugs work in children, in what situations, at what doses, how often you repeat them and then we can actually get that information out there so that someone working in another hospital who’s never looked after a child with these symptoms before will actually be able to look up a drug dose and know that they’re being given the right dose and it’s the right thing to do.”
Maggie: “This is a much-needed, under-resourced area that we’ve got to invest in. And we’ve got to be able to use the expertise of specialist teams and be able to use their knowledge, their training, their experience and replicate that throughout the country – internationally.”
Ruth: “Even if the work that they do at the centre produces one piece of medical research which alleviates one type of pain in children, it will be a great thing. It will be a really, really great thing. And it’s a great thing that will benefit not just Great Ormond Street Hospital and the Institute of Child Health and not just London and hopefully not just the UK – people anywhere.”