A long time ago, I was telling a friend how our lives had changed. “Where’s your blog?!” she said. “There is no time,” I replied, because there wasn’t. Aged five, my son Adam had been diagnosed with Acute Lymphoblastic Leukaemia (ALL) and by the time I was sitting at a table with my friends answering their questions, he was eight and still on treatment.
Of all the childhood cancers, ALL is the most common, and generally regarded as the easiest to treat. Even so, treatment currently takes just over three years for boys, but only two for girls (although there is a possibility that in future, boys will receive the two-year protocol).
It takes over your life. It started the moment we got the diagnosis and the lives of our whole household were turned upside down in a heartbeat. Hours from home, Adam and I remained in isolation while he underwent induction therapy, some of which we had to hold him down for while he screamed in pain at the treatment we hoped would save him. We knew so little. Being discharged three weeks later to be treated as an outpatient seemed so, well, outpatient-y.
First came the rules, the restrictions, the lists of things we could no longer do, the places we couldn’t go, the infections we had to avoid. Our careers were on hold, having been advised by the consultant that our work was not a great mix for parents with an immunocompromised child who would have random emergency admissions over at least the next three years. We had no cash and a car whose only reliable quality was comedic timing. Then the phases of treatment were explained: induction, consolidation, maintenance, delayed intensification 1, maintenance, delayed intensification 2, maintenance. And so on.
Monday was clinic day, at our local shared-care hospital; Tuesday was frequently spent on the ward; Wednesday was lumbar puncture day – at least every four weeks; Thursday was often only a half day and Friday was chemo day. Saturday and Sunday were the days we did, between us, all the shopping, all the laundry, and all the family time – quite a lot of which was spent in a lengthy game of catch-the-sick.
Adam – and therefore we – could not go to any fast-food restaurants unless we used the drive-thru. Public transport was a no-no because a giant cigar tube full of stranger’s germs is not a great place to sit. The cinema was also out, for the same reasons. The things you’d regard as a nice treat for your kids were suddenly on the wrong side of a risk assessment.
This made going back to school a lot more difficult, as we found, a year later, when Adam was able to attend part-time. Yet despite the pre-return visits from our outreach nurses and a letter from the consultant outlining the necessary precautions, the school still thought we were asking too much. The thing that still baffles me is the speed people rush to tell you that it “can’t be” as full-on life-changing as you’ve just said.
Every Monday, bank holidays included, you go to clinic where they tell you how much immunity your child has this week, and whether or not you can take them anywhere outside the home. Every day, you are watchful, knowing they can go from playing in the garden with their pals to having a fever and medical isolation within 30 minutes. A 24-hour bug for everyone else is five days in isolation, on a drip, for one of our kids. You keep a hospital bag packed and ready, if not permanently in the back of the car.
Relationships are lost. Friends are lost. Community support is patchy, or drifts away when they realise that they are not going to Google an heroic quick fix, and you will never respond with the answers they want to be true.
A word of advice, then if someone you know is in this position: it’s absolutely fine to not know what to say. In fact, “I have no idea how you must be feeling,” or “I don’t know what to say,” are the perfect responses. Children get cancer and their treatment protocols are more aggressive and take longer than adult treatments. Parents genuinely cannot give any long-term projections, or say how well the treatment is working, but whatever they can tell you, you should believe them, because you really could not, and would not, make it up.