A little hero's journey: our duty to deliver
In an interview with C-Further, John Rainsbury shares his son Will's cancer journey and the hope that new paediatric research might bring to children affected by cancer and their families.
A little about Will’s journey
Will was an adventurous and cheeky six year old, full of beans and with a real love for life. Our happy, ordinary world was turned upside down one day when we took him for a precautionary scan following a couple of episodes of morning vomiting.
We were seen and there was nothing to worry about, but minutes later the consultant walked in.
Despite being caught early, Will's tumour had high risk and fast-growing genetics (Group 3) and had already spread through his cerebrospinal fluid, coating parts of both the brain and spinal cord. The treatment that followed was extremely aggressive, including:
15 hours of brain surgery
32 days of radiotherapy
6 months of chemotherapy
15+ general anaesthesias
56 blood transfusions
It was so small they’d missed it. But it was there: a tiny tumour on his brain; a particularly aggressive type of Medulloblastoma.
The journey for us as a family was terrifying, bewildering, confusing, exhausting and punishing not just for Will but for his younger brother. People often don’t see behind the closed doors of childhood brain cancer – the endless injections, the midnight admissions with constant infections, the weight loss, the vomiting, the inability to eat, your child being hooked up to three IVs for three days solid or having to be bolted to a table with a mask over their head and torso for radiotherapy or being held down by nurses to have an NG tube fitted or spending days in isolation when they just want to run around a park.
As a parent, seeing your child suffer is insufferable. We felt desperate, out of control and unaware of how to support our younger child who was watching this happen to his big brother.
Will soldiered on like a little hero and his surgery was a great success. During his last month in hospital, we were excitedly planning what we’d do when all the tubes came out. He was so excited to get back to school with his friends and we were so grateful to resume our happy, ordinary family life again.
Just two weeks before his nine months of treatment finished, Will relapsed and quickly succumbed to the aggressive progression of his Medulloblastoma within a month. On Valentine’s Day 2019, we lost him.
The journey without Will
Our family will never be the same again. We fought as hard as we could to save Will and we couldn’t but, perhaps we can be a force for good to help other families save their children. This is the hope that drives us forward.
When Will first relapsed, I remember my surprise at the lack of viable trials available for him. Additionally, I reflected on terms used during primary treatment like ‘standard of care’ or ‘curative pathways’. These offered comfort for those undergoing primary treatment.
This masked a reality that the treatment had changed little in 30 years and for his genetic variety (Group 3), he probably had a little less than a 50% chance of success.
Since then, I have tried to support the advancement of new treatments and have developed a much deeper understanding of the operational and scientific challenges, costs and timeframes required for progression, especially in rare and paediatric cancers. At every stage of the pipeline, there have been barriers to progress, great potential advancements simply have often not been able to generate traction for pre-clinical development to progress further. Even worse, this reality puts many promising studies from every getting started and many talented researchers from focusing on rare childhood cancers altogether.
Righting a Wrong
For me, initiatives like C-Further is a key step forward. Bringing the sector together with a shared purpose, provides a critically needed pathway for discovery research to advance far enough to test new treatments in a clinical setting and potentially offer a real chance of hope through new treatments for children who simply have no viable options today.
This has been a long-awaited missing step for new treatment and it is really exciting to see the first two projects launch in March 2026. Additionally, this feels different to previous small steps made.
My hope is this is the first announcement of many new studies and this momentum in turn bring new partners to support the C-Further initiative cementing the concept. These kids have been let down for decades, this is a real chance to change that.
This is not tweaking existing treatments for marginal results, these studies aim to open up a new front of attack against cancer that can compliment and compound with existing approaches.
I mentioned earlier, our family will never be the same again. We fought as hard as we could to save Will and we couldn’t, there were not the options available. If we can make C-Further and its pipeline of studies a success, this doesn’t have to be the reality for other families.
You can read more about us and Will at www.littlehero.org.uk.
John Rainsbury, father of Will, patient advocate
Creating hope through research
Through our collaboration with MiNK Therapeutics and the University of Southampton, C-Further is developing CF-033: a novel cell therapy designed to target PRAME. This is a protein that some aggressive cancers like medulloblastoma use to develop and spread. By targeting this specific marker, we aim to provide a more precise and effective option for little heroes like Will.