As I’m sure you know, September is childhood cancer awareness month. I’ve given lots of interviews over the past few years about my personal experience of childhood leukaemia, but I’d like to delve a little deeper, past the fact that I have been lucky enough to survive and am generally fit and healthy currently, almost twenty years after my treatment. Some of my friends were not so lucky, and some of those who did survive now suffer long term effects from their treatment.
The ‘cure’ rate of childhood leukaemia is now almost 90%, up from around 70% when I was diagnosed in 1995. This is a giant leap, and we absolutely should be proud of the progress doctors and scientists have made, thanks to charities like Leukaemia & Lymphoma Research, but we must not forget that 1 in 10 children still lose their lives, and that the treatment is long, hard and affects not only the patient, but the whole family too.
What I haven’t spoken about so extensively previously, is how hard and painful the treatment can be. The night I was diagnosed, I had drips in my hands and feet, and a temperature of 38°C – I can remember lying in a bed in my local hospital in a dark room because looking at the lights was painful. My parents were holding ice packs on my hands and feet where the canulas went in, as my veins were so inflamed and painful.
I got transferred into hospital the next day, and remember getting to the ward and being given tablets for the first time. Seven year olds don’t really take tablets, and I remember refusing to take them, as they made me choke when I tried to swallow them. After a lot of trial runs, coughing, choking and a bit of bribery from my parents, promising me a present when I managed it, I finally got the hang of it, which was good, as sometimes I was expected to swallow up to twenty tablets a day.
Over the next couple of months, I was almost always in hospital having induction chemotherapy, the most intense stage of treatment, designed to get rid of most of the leukaemia cells. I was on a lot of different drugs, some swallowed, some injected into my ‘Wiggly’ or hickman line and the one I dreaded most; asparaginase, which was injected directly into my buttock with a giant needle. I knew when one of those days was coming, and I was nervous for days before as it hurt so much. There was one drug, methotrexate, which they injected directly into my spine – most of the time under general anaesthetic but on occasion my back really hurt the day afterwards, which stopped me from walking around much.
The scariest part of my treatment was by far when I woke up one morning at home, having been into the hospital for treatment the day before, and was paralysed down my left hand side. I’d experienced a rare complication of the methotrexate treatment and had effectively had a stroke, aged 8. My parents were terrified and the doctors were trying to figure out what had happened, nobody knew if I would recover, or ever walk again. A few days later, I started to get better and did eventually make a full recovery, regaining all movement and feeling in my left hand side, but I couldn’t have that drug again, which made it more likely that my leukaemia would come back, the doctors had to take a chance.
I made loads of friends on the ward, including a four year old boy, who I used to read to before bed. One day, he died when we were both in the ward. There was another friend, a boy my age who loved fruitella sweets. One day he just never came back to hospital, he had died of a brain tumour. Another friend, a girl my age once came back from an operation to the bed next to mine and was in so much pain she didn’t stop screaming for hours. She’s okay now I’m happy to say, but back in the day on the childhood cancer ward, I think I lost as many friends as survived. This is the only part of it all which still makes me upset. My friends had barely begun their lives before they lost them – and I wish we had the chance to grow up together, they would have careers and maybe families now and we would all be friends on Facebook. It makes me sad to think that they never got the chance to experience what I have.
On August 30th, I had an article published in The Times newspaper discussing the toxicity and long term effects of childhood cancer treatments. Although it is a difficult topic to write about and digest, with many survivors and families wanting to put the whole traumatic event behind them, recent research that has been done highlights the need for survivors to continue seeing their doctors to make sure that if they do experience long-term side effects, these can be tackled early to minimise the effects on their health.
A study published last year by Dr Leslie Robison, who works at St. Jude’s children’s hospital in the USA, looked at 1,713 childhood cancer survivors (not only leukaemias) and found that almost all of them will experience a chronic health problem by the age of 45. Leukaemia treatment regimens have improved vastly over the last few decades, notably with far fewer patients needing radiotherapy – which can have well documented long term side-effects, but this research shows that there is so much more we still need to do to allow children with leukaemia to not only survive, but be allowed to live normal lives without fear of health problems from their early treatment.
As a survivor of childhood leukaemia myself, I wanted to write the article not to scare survivors and their families, but to bring awareness to the fact that although 9 out of 10 people now survive childhood leukaemia, the treatment is harsh and toxic and we must never stop looking at ways to improve it. If you or a loved one is a survivor of childhood leukaemia, I would recommend making sure you stay in touch with your doctors, even if you feel fine. Although rare, there is a chance that a particular type of drug called an anthracycline can damage the heart – and this sometimes is not seen until many decades after treatment. I go for a very easy, non-painful test called an echocardiogram every four years, despite the fact I comfortably run half marathons, just to check everything is fine.
As well as this, as survivors we can benefit research into the long-term effects of treatment, just by seeing our oncologists every now and again, so that records are kept of our general health. I don’t worry about these things, despite knowing a fair bit about them because of my job. I’m thankful to the doctors and scientists who worked to make sure I survived leukaemia – and if I do experience any long term side effects in the future, I will fight them with the same determination as I fought leukaemia twenty years ago. Without the treatment I wouldn’t be here now writing this blog post.
Progress to refine currently leukaemia treatments to minimise side effects for patients is already being made. Leukaemia & Lymphoma Research-funded scientists at Newcastle University have recently published some excellent research showing that 20 per cent of childhood leukaemia patients with the most common form of leukaemia, B-cell precursor acute lymphoblastic leukaemia (B-ALL), may actually be able to have less treatment, and have the same chance of surviving. This kind of research is vitally important for minimising the long term side effects of the treatment that children with leukaemia receive, and despite the good survival rates from current treatment, we must never stop looking at how we can improve treatments to minimise effects on children and their families.