Kerry Brown, mum to Felix who was diagnosed with acute lymphoblastic leukaemia (ALL) in 2016, explains how her family navigated the challenges of Felix’s education during treatment
Felix was diagnosed when he was 10 years old and it was a bolt from the blue. A couple of weeks before he was diagnosed, he had a strange infection and our GP agreed to refer him for a blood test. We received the results on 26 January 2016 and that day changed our lives forever.
When Felix was diagnosed, the treatment plan for ALL was three years and three months. It was heartbreaking to think that our 10-year-old boy would be 14 when he finished treatment. It seemed like a lifetime away. Immediately, school and education became unimportant - our initial priority was his physical and emotional wellbeing. As time passed, we started to make sense of things and consider the possibility of him seeing friends and going back to school.
As teachers, his dad Dylan and I knew and understood that the constant of school and education was important for children and their families. However, this was now us, talking about our child. We had to balance what we knew as teachers and our love for our child. He was so poorly because of the chemo and steroids we decided that his education had to take a sideline. His wellbeing came first.
Gradually, his treatment plan became more familiar and the initial shock began to ease. He agreed to go back to school and first returned about four months after diagnosis. It wasn’t easy for him, or for us. Despite being bald and bloated, he was so brave and did it. It was a gradual reintegration and before we knew it, he was loving school, just as he used to.
Felix started Year 6 at the same time as he started maintenance. His hair was growing back and he had his portacath removed. This meant he could play football again, which was all he really wanted! He took his SATs and met the expected levels despite his absence from school and managed around 80% attendance.
When he started secondary school, he presented as a healthy 11-year-old boy despite being on daily chemo. I needed this new school community to understand exactly what he’d been through, just in case.
While I wanted Felix to be treated like all the other kids, I wanted them to also know that to achieve this he’d had to cope with and overcome so much including:
- Unplanned and forced separation from one parent or both and siblings
- Pain following surgery and procedures
- A portacath inserted into the side of his chest
- Anxiety relating to medical procedures and appointments
- Extreme fatigue, tiredness and sickness because of chemotherapy
- Significantly reduced mobility
- Emotional and mood changes because of medication
- Significant changes in appearance leading to poor self-image and low confidence
- Emergency admissions to hospital because of infection
- Restricted and controlled diet
- Loss of dignity and control
- Isolation from family and peers
- Overexposure to clinical and medical environments
- Extensive adult company
- Regular temperature checks and medication at home
- Fear and distrust of adults
- Resignation and disappointment from missing social or sporting events and holidays
I also wanted to make sure that schools understood the impact of Felix’s diagnosis on his brother and sister, Rufus and Talia. They may have appeared well-adjusted, but they’d witnessed their much-loved brother experience so much.
They watched Felix sleep for days because of chemotherapy, they saw his hair fall out and they have run for the sick bowl to try to save his dignity. They saw their mum and dad cry (a lot), felt frustration when Felix received another gift or treat and felt disappointment when Felix and either myself or his dad had to spend another night at the hospital. There’s also been the uncertainty of who will collect them from school, cancelled plans because of infection risk and guilt as they carry on with their everyday lives.
Despite this, they’ve never said a word as they know that Felix’s experience has been far tougher. They are the unsung, silent heroes.
We’re now five years since diagnosis. I had to give up teaching to care for Felix and returning seemed impossible because of the lengthy treatment plan. Instead, I launched my own educational business, Go Fish Education Ltd, which will also celebrate five years this year.
Felix is now in Year 10 and is two-years post-treatment. He’s studying towards his GCSEs and loving every minute - his recent predicted grades made us burst with pride. While Felix loves school, his passion is football. Despite everything, he still dreams of becoming a professional footballer. He trains at least three times a week and regularly plays for a local football team and a development squad. He’s determined to be a success; nothing is going to stop him!
