For Childhood Cancer Awareness Month this year, we want to highlight the difficulties faced by children who receive their treatment as an outpatient and their families. Whilst some children have to be hospitalised for much of their treatment, there are others who are able to return home and come back into hospital regularly for treatment. But this is not without its own difficulties.
Childhood cancer treatment is a huge burden for children and their families. On top of their fear and the often painful and debilitating side effects of treatment, several families must also travel great distances. For a lot of families in Yorkshire, the nearest treatment centre is Leeds Children’s Hospital. For many, this means long trips to and from the hospital, which is time-consuming and expensive, and for those using public transport it can be almost impossible.
We recognise that there could be a tremendous positive impact for children and their families by administering chemotherapy at home. In December 2023, we began funding a brand new NHS role, the Candlelighters Chemotherapy Project Nurse Specialist. Neil Shaw took on this role to lead the initiative and develop an at-home chemotherapy service for eligible children.
The introduction of this service offers numerous benefits to families. The long hospital journeys often result in missed school or work and disruptions to their family life. These challenges have emotional, practical, and financial implications, intensifying a difficult time for the child and their family.
We spoke to mum, Vikki, and her daughter, Nina, from Holmfirth, West Yorkshire, who have experienced the positive benefits of this role.
Nina was diagnosed with a rare brain tumour when she was just one year old. Although she had surgery to remove the tumour two weeks later, because of its position, the team were unable to remove all of it and a follow up scan confirmed further growth of the tumour. Nina began chemotherapy with further surgery eight months later to reroute the blood supply to her brain after a scan showed concerning pressure on a major artery.
Vikki said, “The impact of the diagnosis is hard to put into words. It’s a bit like a grenade being thrown into your family life and everything changes, whilst you try to continue as best you can. It isn’t possible to continue with life as it was before the diagnosis and chemo – but we’re thankful for every minute of time we have as a family.
Because her chemotherapy initially could only be administered at Leeds Childrens Hospital, we had to travel, through rush hour a lot of the time, which would take upwards of an hour on a good run, normally missing school or work to do so.”
Nina became eligible to take part in an early trial of chemotherapy at home and was treated by Neil. Vikki said, “It made life a lot easier and the treatment a lot less traumatic. It transformed very tricky days into just a small amount of time: Nina still has some difficult memories of being in the hospital, so being able to be in her own home, in a space she felt comfortable, was an incredible improvement for us all. She could even pick out her own plasters afterwards. Although this sounds so small, it made such a difference to how she was able to cope during the process away from a clinical environment.”
Vikki’s elder daughter, Ismay, also benefitted from the outreach chemotherapy treatment. Her parents could take her to school as normal whereas, before, her day-to-day life was disrupted. She could also get to know Neil, be there for Nina’s treatment and understand what was happening, which previously hadn’t been possible at Leeds Children’s Hospital.
Neil says, “Parents have been able to spend more time either with their child, or going to work, and they haven’t had to travel long distances each way, paying for parking, food, petrol, or accommodation, which has positive financial implications. We aim to be flexible with the treatment and, if possible, administer the chemotherapy before or after a child’s school day, so they can go to school as normal and not miss any of their education.”
This pioneering role is the first of its kind, and we’re hoping to inspire other teams across the country to adopt similar approaches.
Join us this Childhood Cancer Awareness Month to make lives better for children with cancer. You can make a donation here.
