Charlotte Bowling’s daughter, Amelie, was diagnosed with acute lymphoblastic leukaemia (ALL) in June 2019 aged six. Charlotte tells us about the support her daughter and her family received from her school, including an innovative way of ensuring Amelie was involved even when not physically present.
To say Amelie’s diagnosis was a shock is an understatement. She’d been unwell with what we thought was a sickness bug, but we’d no idea this was one of the early signs of her illness. Within hours of being told she had leukaemia, we were transferred by emergency ambulance from our local hospital in Luton to Addenbrookes in Cambridge to start chemotherapy. Amelie then spent three weeks receiving high-dose chemotherapy in hospital while her dad, Darren, and I juggled being with her and looking after her brothers, Henry and Reuben. Thankfully, these initial stages of treatment went positively, and she came home in July, returning to hospital several times a week for more treatment.
Amelie received a mix of care at home from our community nursing team and inpatient treatment in hospital. At times, this was very difficult for her as well as the rest of our family. It’s hard to watch your child in pain, watch their hair fall out, refusing to eat, and then them gaining weight due to the mixture of drugs she required. She missed an incredible amount of school, gave up extracurricular activities and spent a lot of time at home due to the side effects of treatment.
We were very lucky to receive incredible support from Amelie’s school, Putteridge Primary, which Henry was also then attending. The staff, pupils and wider school community went above and beyond to offer support to our whole family. In September 2019, just a few months after diagnosis, Amelie returned to school part time. Although her health remained our priority, we wanted Amelie to return to some kind of normality and school was a part of that, both in terms of education and spending time with peers.
Our deputy head teacher, Nicola Chinnery, saw a piece on BBC News where another child was using an AV1 robot to attend school remotely and we were extremely pleased when we were able to get one of these robots via a scheme at Addenbrookes hospital. ‘Amelie-bot’ attended lessons when Amelie couldn’t, with the lesson streamed back to her iPad in our home or at her hospital bed. This was invaluable as it allowed her to keep up with her schoolwork and see her friends and be part of the class environment. As Amelie moved to the later phases of treatment, she was able to attend school more and the staff supported her to catch up on the things she’d missed.
During her treatment, Amelie faced the everyday challenges all cancer patients face - looking and feeling incredibly different to everyone else, and battling with thoughts and fears you shouldn’t have to as a child. This could have quite easily been compounded by her missing so much of her education, and peer and friendship integrations. We’re eternally grateful to the school, and the wider community, for working with us to find innovative solutions that meant Amelie wasn’t missing out. It provided a chance of fully reintegrating into education without facing a mountain to climb to be at the same academic level as peers.
Amelie’s approaching three years post-treatment and is a healthy 11-year-old girl. Her hair’s grown back, she’s returned to doing all the things she loves and is full of energy. She’s sitting her SATs this year and is on course to do really well, which is testament to the unwavering support from the school.
Cancer is incredibly hard, and you never know how strong you are, until being strong is your only choice. In the face of such adversity, maintaining a semblance of normality can become not just a goal, but a lifeline. Focusing on education offered a sense of continuity and purpose. It was never just about keeping up educationally with Amelie, it was also about staying connected to the world beyond the illness, and to continue growing, learning and thriving.
The school’s perspective
Nicola Chinnery, Deputy Head, Putteridge Primary School tells us more about how the school supported Amelie.
At first, we felt quite under prepared as to how to support Amelie and her family. It was important for us to have clear lines of communication, so we set up one point of contact in the school. We wanted the family to know we were there to support them, and we made sure that pastoral support was put in place for Amelie’s older brother as he tried to navigate ’the new norm’ of having a sister with cancer. During the early days, we reached out to our school community to support Addenbrookes and their ‘bravery boxes’ (used to give a child a treat after treatment, operations or procedures) which Amelie and her family were able to take to hospital. Her parents kept us informed as to how her treatment was going until we were at a point of Amelie trying to return to school.
A clear plan was put in place for Amelie’s return. We spoke to her class and shared books about children with cancer. Amelie and her mum came to visit so the children could ask any questions. Her fantastic nurse came in and talked to the staff in the year group about her treatment and Hickman line, and answered questions and concerns. We also had to consider the dangers of measles and other infectious diseases. The school sent out a letter to parents explaining the risks and asked them to keep us informed.
Amelie returned to school on a part-time timetable, which was agreed with the education welfare officer. When she wasn’t in school, the work was printed out so she could access this at home. We also had to make sure she had access to resources at home, so we supplied a bag of maths resources, sound/spelling mats, art materials and anything else she may have needed to access lessons.
Support was also provided from Young Lives vs Cancer. They came in and did a whole-school assembly about children with cancer, while they also talked to staff and gave us advice on how to support her brother.
A new approach to learning
When the school was given the robot to support Amelie, the staff embraced it straight away. Amelie-bot was used when Amelie was unable to be in school, with any resources needed for the lessons photocopied for her. Amelie-bot came to assemblies, ate lunch with her friends and even took part in the Christmas party!
The children and teachers soon got used to the robot. Amelie could see and hear everything that was going on in the classroom and could press a button so the robot’s head would change colour – this would indicate that Amelie wanted to answer a question or needed help. When COVID-19 hit, Amelie took part in remote learning using Google Classroom.
Once the Addenbrookes project finished, we had to return the AV1. However, Amelie was still going through treatment and needed access to a robot. Another parent found the charity SpecialEffect and its Bubblebusters initiative which loaned AV1 robots to schools. Amelie’s parents successfully applied for this, so we were able to continue with Amelie-bot until she finished treatment.
Additional support was given to Amelie on her return, both pastoral and academic, while allowances were also made around her attendance and tiredness. She’s flourished since returning to school, thriving academically, and she even went on the residential trip.
Supporting a pupil with cancer
Our guide, A school’s guide to supporting a pupil with cancer’ aims to lessen some of the worries you may have by giving simple practical information and advice on a variety of issues faced by the child and their family, and some ideas on how to help them within a school setting.
From Contact magazine issue 103 | Summer 2024
