Twenty years ago this week, I was diagnosed with acute lymphoblastic leukaemia (ALL). I had been ill for weeks and was slowly getting worse, with it being increasingly apparent that my original diagnosis of pneumonia was not the full-story. When I definitely wasn’t getting any better, my mother took me back to the doctors and I was sent for a blood test. After that, everything moved very quickly and within a day I was at St. Bartholemew’s hospital in London, fifty miles away from home, beginning a two-and-a-half year treatment program for intermediate-risk leukaemia. The cytogenetics showed that one of my blood stem cells had lost a big chunk of its DNA , and without it was unable to properly regulate its growth. The rogue cell started to divide uncontrollably and was soon filling over 80 percent of my blood with dysfunctional white blood cells. Most of this space is meant to be taken up by red blood cells, which was the main reason why I felt so tired, my blood couldn't carry enough oxygen for my body to work properly. I was given about a 60% chance of survival and would have died within weeks without treatment.
The doctor who greeted my family and I on the ward in late December 1994 was a lady who all of the kids on the ward referred to as ‘Dr K’. She was the consultant in charge of overseeing my treatment program and progress for the next few years. I remember her being very kind, softly spoken and incredibly reassuring to my parents who were understandably in shock at how quickly their lives had been turned upside-down. Over the years I was in hospital, I was a very inquisitive child and asked her lots of questions about my treatment and cancer. Despite being incredibly busy, she was always very patient and made time to explain things to me and importantly, at a level which I could understand as an eight year old.
The last time I saw her was for a check-up when I had just started my PhD, as afterwards, I transferred my long-term check-ups to the area where I now live and work. However a few weeks ago, I emailed her about an idea for a research project I had, and today we met up for coffee near to where she works in London. I instantly recognised her when she walked in, she had the same kind smile and we hugged and ordered coffee before chatting for an hour and a half. We discussed how strange it feels for me to have to handle some of the chemotherapy drugs I use for experiments at work in special containment units to protect me from them. Previously they were injected directly into my bloodstream, muscles or spine. We talked about my family, her work and doctors that we both remember from the ward. But most importantly, we talked about an idea I had a couple of months back for a research project, which I had hoped she could help me with.
When I was on treatment, I experienced an unusual and serious side effect from one of the chemotherapy drugs, which sadly children on treatment still experience (albeit thankfully rarely). Now, I know a lot more about biology, genetics and how chemotherapy drugs work, I think I might have an idea as to why the side effect only happens to some people like me, and not others. I discussed this with colleagues at my research institute last month, and although everything is incredibly ‘early-days’ in research terms, we are looking into it further. I emailed Dr. K to ask her to have a look at my medical records to see if my theory is correct in my case. She’s still trawling through them as there is a rather large stack of folders (!), but she was really interested in the idea and I gave her a review I’ve written summarising the science behind it. Minimising both the long and short-term side effects of childhood leukaemia treatment is now a big focus of research funded by Leukaemia and Lymphoma research, and I really hope to be involved as both a scientist and a long-term survivor in the future.
It really was quite emotional sitting drinking coffee and talking to my consultant as an equal about science and leukaemia treatment. After we had coffee, she headed back to the hospital, despite not being on shift today. A truly amazing and inspirational lady, who I owe my life to. I look forward to many more chats in the future.