Caring for Joe

Joe was just four years old when he was diagnosed with acute lymphoblastic leukaemia (ALL) and his parents suddenly found themselves carers for a child with blood cancer. In this blog for #CarersWeek, Joe’s dad explains what it’s like to be a carer, and gives an update on how Joe is doing 15 months after treatment.

In Autumn 2014, our world was turned upside down.  We had been settling into a new routine, with both our children at school and both of us working full time. I had also started singing in a community choir once a week, as a new diversion.  Then, our four-year-old son, Joe, was diagnosed with acute lymphoblastic leukaemia (ALL). In an instant, all of our plans went out of the window and we became carers for a child with blood cancer. In our case, diagnosis was quick: a scan, a blood test and a phone call: ‘Please come in and bring an overnight bag.’ There was no time to worry about the ‘what ifs’ before we were on the ward.

That first day, we cancelled everything for the next week, and then the next month. Gradually, the ward became a familiar place, but in the first few days and weeks there was no routine – as the intensive cycles of treatment kicked in and Joe became more and more poorly in front of our eyes. In hindsight, we were fortunate in many ways – our jobs are flexible and we were able to keep things ticking over by working away from the office. The hospital was five minutes’ drive from home, and granny and grandpa lived within driving distance and were able to drop everything to help out.

Having to clear my diary of all other worries and commitments was both a necessity and, in hindsight, a great relief. I had no space left in my head to even think about anything other than the terrifying, all-consuming but tiny new world that we had entered. There was just one chink though; one piece of the outside world that I couldn’t let go was the singing. For me, this was a space where for two hours a week I could decompress and put aside the world of coping and caring. Unaccompanied singing demands complete focus, and creates a shared experience that – in the moment – can feel wonderful and immediate.

The treatment path for ALL is a long one. Memories of those first nine months of intensive treatment on and off the ward are already fading. Cannulas, ‘magic sleeps’, pinging infusion pumps, panics about food and, above all, the slow return of Joe into a seven-year-old who no longer looks ill. For the past two years on maintenance, life has started to become more predictable. Gradually, our horizons have opened up. We have been able to take trips away from home, though always with a route planned to the nearest specialist hospital. Temperature checks and ‘night-time medicine’ are just as much parts of the daily routine of life as getting up or going to bed. Weekly visits from the nurse and monthly trips to the ward mark the slow passing of time and the creeping approach of the planned end of treatment.

Life as a carer can feel a little like running a marathon, only there’s no training and, for the first few months, no real sense of what’s coming next. In the beginning, we were too busy being consumed by caring to find time for us, or for our lives outside. Now, the feelings of exhaustion are being held at bay, and tempered a little by the thought of a time when we might all be free to run and jump and swim and play as we wish. My community choir is still a weekly point of light, only now juggling for space in a calendar busy with the commitments of living and working, not just caring.

June 2019 Update

It is now June 2019. Fifteen months have passed since treatment ended, and the daily routines of those four years are fading. Joe is thriving. He has learned to swim again, has gained his fourth belt in kick-boxing, and does everything else that nine-year-olds do. I don’t know about Joe, but my perspectives on life are changed forever. I live for each day; and with each day that passes, the future gets just a little brighter.

Fatigue

Fatigue is the most commonly reported side effect of leukaemia. Find out more about coping with fatigue.

Read More