Sacha Langton-Gilks was faced with this question four years ago when her son was diagnosed with a brain tumour. Here she tells the story of her son’s incredible treatment and her campaign to raise awareness of brain tumours.
“Mum, can they cure me?”
In October 2007 my eleven-year-old son asked me this question just minutes after being diagnosed with a massive brain tumour.
Fast forward to today, nearly four years later, and the answer is that Southampton General Hospital with local back-up from Salisbury District Hospital and a superb G.P in Shaftesbury have done their very best. The chance of my son being actually cured now stands at between 30-50% depending on whose statistics you believe. To say that I become tearful when I reflect on the unbelievable care and professionalism at these hospitals, both within just over an hour’s car journey from our rural home in North Dorset, is something of an understatement. I will never be able to thank them enough.
To give you some idea of the scale of my son’s treatment, I’ll throw in a few statistics of my own:
- 77 weeks of chemotherapy (56 weeks of an intensive protocol and then a twice daily oral regime for another twenty odd)
- 6 weeks of daily radiotherapy to his brain with spinal boosts
- 10 brain operations ranging from the massive (over 7 hours) to a quick drill for a bolt (half an hour)
- blood transfusions in the tens
- And all this triumphantly rounded off in March of this year with only four weeks in isolation (we had no complications) for the brutal high-dose chemotherapy and stem cell rescue or autograft transplant. A treatment of this length is unlucky to say the least but by no means unusual.
We have had a tough time but I know of others worse. Approximately twenty children die every year from a similar relapse of my son’s cancer, Medulloblastoma.
My son’s medical notes can now be measured in the kilos and his Happy Family pack of doctors now counts four consultants and their teams (registrars, senior house officers and specialist nurses) from four major paediatric departments – neurosurgery, oncology, radiotherapy and endocrinology. (This does not take into account those summoned occasionally from dermatology or gastroenterology). These are the dozens of professionals I can physically see looking after us but then there are those I cannot – in pathology, pharmacy, the blood transfusion service to name but a few. That does not of course include the departments that service the hospital like laundry, housekeeping and catering, let alone all the management.
To run a hospital the size of Southampton that covers an area larger than our village, the logistics are inevitably eye watering. Take laundry. As I bundled yet another set of soiled sheets and pillowcases into the sluice room I was using merely one of the 4,500 that arrive clean at the hospital every morning (Lord knows what happens if that lorry breaks down).
I follow world news and constantly thank somebody that I live in a first world country with FREE healthcare at the point of use. One bag of one of my son’s chemotherapy drugs cost £8,000 and I dread to think what a major bout of brain surgery comes in at. Total costs for my son now run into the millions. Fortunately for us there was not a single point when a treatment or drug was denied and our consultants have certainly had to apply for special funding for him on at least two separate occasions that I know of. I do not know if that was because he was a child or where we live or both or neither. I reflect that I could not possibly have objected if they had refused knowing what he has already cost and knowing that money might save another child.
As a result of these years I have been left with a couple of abiding obsessions. One, to communicate just how incredible the NHS is and that we must nurture and safeguard it. It drives me insane that the media in general only print either a sugarcoated reality or total horror with nothing in between when they discuss the NHS or cancer. To give a good example, last year an article about our family to raise the profile of brain tumours declined to use a fantastic picture they had commissioned of my son where he is seen with a full head of hair, grinning and balancing on an indo-board (an indoor surf-board) and instead used an old picture of him bald and emaciated. Clearly he looked too well and they aimed to elicit maximum public sympathy by adhering to the ‘bad news sells’ approach. The problem then is that we risk public fatigue on the issue and it would be much more helpful to the 1,500 plus families whose children are diagnosed annually with cancer in the UK if the public understood more of the reality. The fact is you often cannot ‘see’ cancer and if the sufferer is on steroids (very common) they can look flushed, filled out and rather well. The photograph of my son in fact represented a triumph – his tumour had been at the base of his skull where the body’s balance, amongst other things, is controlled and therefore the fact of his being able to balance at all was entirely down to the awesome skill of our neurosurgeon at Southampton.
My second obsession is to raise the profile of brain tumours. There are two major reasons for this. First they desperately lack funding, which means they lag miles behind other major cancers in the progress made in the treatment of the disease in the last twenty years. In 2007-8 the Medical Research Council (MRC) invested less than £1 million into brain tumour research compared to £14 million for leukaemia. In 2008 leukaemia claimed the lives of 51 children when the figure for brain tumours and central nervous system tumours was 81. I would not for a second wish the funding to be reduced for leukaemia especially having spent many a long evening huddled in the corridor of the children’s cancer unit in Southampton sharing a bottle of crisp white wine with other mothers and hearing tales from the leukaemia frontline, as our children dozed on their own pain medication – I just want parity of funding.
Second, if people knew how to spot signs of brain tumours we would not be in the current situation where 60% of them are diagnosed at A&E, by which time your chances of being successfully treated are massively reduced. It takes, on average, 3.3 months for your child to be diagnosed from the onset of the symptoms in this country whereas in the US and Poland, it is five weeks. On account of this on 8th June 2011 the Royal College of Paediatrics and Child Health, the Children’s Brain Tumour Research Centre in Nottingham and the Samantha Dickson Brain Tumour Trust together launched a massive initiative to redress this problem called HeadSmart. There are pocket sized symptoms cards and a website available. Writing this article is my way of helping.
So, if you know a child or adult who is displaying any or all of the following, send them to the G.P:
- balance and coordination problems (they can find it almost impossible for example to walk toe to heel in a straight line)
- behavioural changes
- loss of motor skills on one side of the body
- visual disturbances – anything from double vision, blurring, a sudden squint or loss of vision
- any kind of fits
- persistent headaches or persistent vomiting by which I mean being sick over several weeks
- morning sickness (and they cannot be pregnant).
You are looking to connect these symptoms over a period of weeks. If you are not taken seriously, ask to see someone else in the practice or go to an optician who will be able to detect raised brain pressure through the eyes. If all else fails, go to A&E and insist on a brain scan. I should stress that these symptoms do not have to mean a brain tumour and it is very rare, only affecting about 500 children annually in the U.K but clearly it has to be ruled out.
Finally if you are in any mood to fundraise, please help the Samantha Dickson Brain Tumour Trust, the largest of the U.K’s brain tumour charities continue to fund vital research work or CLIC Sargent: Caring for Children with Cancer. They have both been instrumental in keeping my family sane and financially secure. Support ranges from throwing a tea party to running a marathon or you can simply write out a cheque.
If nothing else, just forward this article to friends so you are helping the HeadSmart Campaign. Thank you so much.
By Sacha Langton-Gilks