Lauren Bryce’s son, Alfie, had just begun his final year of school when he was diagnosed with leukaemia, aged 15. Here, she tells us about their struggles with the education system after his diagnosis and what could have helped him as he prepared to take his GCSEs.
Just two days into Alfie’s final school year, he was very unwell. The memories of the days that followed are hazy, but he was very quickly transferred to hospital and was diagnosed with acute myeloid leukaemia (AML). Alf endured his first round of chemotherapy like a champ, but unfortunately this didn’t have the desired effect and his leukaemia wasn’t responding to treatment. He started an early phase clinical trial, which got him into remission, and he then had a stem cell transplant with his youngest brother, Bertie, being his donor. Alf remains in remission and is recovering well, with some long-term side effects from treatments.
*Alfie with his younger brothers, Ollie (left), and Bertie, days before diagnosis
Alf received all chemotherapy and his stem cell transplant as an inpatient, which meant he didn’t attend school during treatment and during most of his six-month stay he was too unwell to engage with school work. This has meant that Alfie did not sit any GCSEs, and his last ‘normal’ school year was year 8, due to COVID-19 lockdowns and then his cancer diagnosis. Alf has started college, but due to his lack of qualifications and confidence with academia he started on an independent life skills course. He’s enjoyed his time at college, even if they do question and require proof of every absence, which is quite frequent due to his appointments! And it’s difficult for us to prove he’s genuinely unwell post-bone marrow aspirate. However, it has allowed him to get into a routine of getting up, navigating public transport and spending the day with his friends, which he has enjoyed.
*Alfie at Christmas, post-transplant
Alf is hopeful to go onto a mainstream course in September, though it will have to be a foundation level course due to his lack of GCSEs and he’ll need to sit maths and English alongside it, but we know this will build stepping stones to a bright future for him.
COVID-19 proved that there are many alternatives to educating a child away from a school setting. There were also allowances made for young people in their final years of schooling during COVID-19. For example, they were awarded GCSE and equivalents without taking exams. We’ve been left wondering why these allowances can’t be extended to help children like Alf, and it’s very disappointing that they aren’t.
Alf did spend an hour or so a week with a hospital tutor, Isabelle, who was a welcome presence when he was feeling up to it. It was a distraction from treatment and someone who wasn’t his mum or dad. And, if school had been more supportive, Isabelle could have liaised with them to provide work that was similar to his classmates, giving them common ground to chat about while gaming in the evening! Even if they assisted us in all working together to follow the curriculum, maybe he could have completed a coursework-based qualification or possibly one or two exams.
*Alfie and his post-cancer wish puppy, Llewi
Alf is now two-years post-stem cell transplant, and it will be a few more years before he finishes education with qualifications that match his peers. However, we’ve no doubt he’ll get there, and he isn’t in a rush to be an adult, even if he’s now 18!
From Contact magazine issue 103 | Summer 2024
