Larsen and Snowy have radiotherapy

At Larsen’s Pride, we believe that the option for awake radiotherapy should be more widely available for the youngest brain tumour patients. 

Chair of Trustees, Holly, explains why this is such an important project:  

“The trauma of paediatric brain tumour surgery and treatment is unimaginable, unquantifiable and indescribable. From neurosurgery that has the potential to leave children blind, paralysed, at risk of stroke or with ongoing hormonal imbalances to the highest doses of toxic chemotherapy drugs which adults struggle to manage. As a parent, I look back on Larsen’s radiotherapy treatment as a time of comparable solace. He would happily scoot into the radiotherapy department, chat with the team and then calmly listen to Disney CDs while he lay, awake, and alone for the treatment. It was a fight to get his oncology team to believe that a four, almost five year old, could do radiotherapy awake, but we proved it and he did it. And without general anaesthetic, we were in and out in less than an hour. Larsen went to school, birthday parties, out for tea, he played in the garden and in his bedroom, he spent time with family and friends. Without the opportunity for awake radiotherapy, he would have missed so many more opportunities to do normal things that normal children do.” 

Project Rationale

We have consulted with parents, play specialists, therapeutic radiographers and health care professionals involved in the radiotherapy pathway. We have established that awake radiotherapy is not consistently available for children under the age of 6 years old, but it is possible, and it does have support.

As a charity, we believe that awake radiotherapy can provide respite from the drugs, needles and interventions that children with brain tumours face on a long term and daily basis and most importantly, can allow for more time at home with family and friends.  

Brain tumours are the biggest cancer killer of children and they are treated with some of the cruellest drugs and surgeries. Less than 80% of children survive a brain tumour diagnosis for more than five years, and those who do are more likely to face future malignancies from the toxicity of the treatment, later in life. It is very sad, but very true, to argue that every second of time these children spend with their family, enjoying the normal aspects of childhood, playing, being at home, is golden.   

Our awake radiotherapy project aims to support more children and families in accessing these golden seconds, minutes, hours and days.  

How will we do it?  

Supporting children: We believe that play and preparation are key to children successfully accessing awake radiotherapy and our initial consultation almost unanimously requested the development of an animated resource. The animation is aimed at children under the age of eight to familiarise them with the treatment process. 

Supporting families: We want to help parents and carers to ask the right questions and be confident to open a dialogue with their children's health care professionals around awake radiotherapy. We have developed a series of videos around the health care professionals who work in paediatric radiotherapy, what they do and what parents can talk to them about. We are also looking to develop some print resources such as posters to encourage dialogue around accessing awake radiotherapy.

Supporting health care professionals: We want to support health care professionals to develop their processes to include the consideration of more, younger, children for awake radiotherapy. We are lucky enough to have Claire Hardy, Senior Play Specialist at UCLH, on our board of trustees and with her guidance and support, we are in the process of developing CPD workshops to support therapeutic radiographers in embedding play and preparation techniques into their practice. Our Chair of Trustees, Holly, will also be available for guest lectures on the importance of this project from a parent/family perspective.

We want to hear from you!

To share your experience or for more information on our work you can contact us here: hello@larsenspride.co.uk