Long-term treatment: a parent’s perspective

Some children require ongoing treatment after a stay in hospital. Here, Ali talks about her experience of going through long-term cancer treatment with her son, Ben.

January 2023. Time to move to the Long-Term Follow-Up Clinic as Ben’s five years of remission are officially over. If you’d told me eight years ago that this day would be here and pass without fanfare and celebration I don’t think I’d have believed you. That day, in October 2014, when we were told that Ben was going to have to take chemotherapy drugs every day for the next three and a quarter years felt like an entire lifetime ahead of us. In fact, by the time Ben finished treatment in 2018 he’d spent 50% of his life on chemotherapy. The three plus years of treatment looked never-ending in 2014, but we survived and it became a new normal. And then we went back to another normal once it finished. 

This photo was taken the day Ben and I spent the day in A&E to see what was wrong after he’d had a chest infection and then limping/sore legs and a low grade fever for a fortnight. Little did I know that I wouldn’t leave a hospital for 4 days as we were called back that evening for more blood tests and he was diagnosed with Acute Lymphoblastic Leukaemia the next afternoon. He was 3.

2015. This is one year into treatment and in the long maintenance phase of treatment. He’s bloated due to the steroids he would take one week in four, and the daily chemotherapy.

Here he is, in February 2023, a month after moving to long-term follow up.

He’s now 11 and although he remembers little bits about “his poorly blood” it’s not much but he is now old enough to understand what was wrong with him and how it was treated in a way he didn’t while on treatment.

But, treatment for Acute Lymphoblastic Leukaemia (ALL) rapidly became our new normal of regular calls with our Oncology team, visits from the community nurses, daily (at the start at least) visits to the Royal Marsden in Sutton for in-patient chemotherapy or visits to the Day Unit for chemotherapy.  As time went on we settled into a pattern – Ben went back to nursery and then started primary school.  We were lucky that we managed to avoid too many in-patient stays as a result of the usual childhood coughs and colds and before we knew it he was into remission.  

At the start of remission, we still had access to our local hospital if we had any questions or he was unwell for the first six months. His consultants saw us every four to six weeks, which dropped to every three months by the end of year one. For the final three years of remission, one of his consultants saw him every six months. Although moving into remission, and then long-term follow up, can feel terrifying, it’s a gradual process and your team are always on the end of the phone if you’re worried about anything.