I’ve been immersed in neuroblastoma research since late 2009 when it became apparent Adam's disease wasn't responding to any available treatment, and we fell off the rollercoaster of standard protocol. A lot has changed in that time, back then there was no treatment for relapsed or refractory neuroblastoma in the UK. Palliative chemotherapy and MIBG therapy. Now there are more trials, more options, treatment with curative intent - despite myths to the contrary perpetuating in some corners of the internet. However, too much has also remained the same. The outlook for children whose disease doesn’t respond to upfront chemotherapy remains very poor. As does that for children whose disease returns after responding and going into remission, with a general rule that the quicker it comes back the worse it is. For children who are free of disease at the end of all treatment the chance of a relapse remains far too great, though again not as high as some numbers quoted online. There may now be a strategy and more trials available for children who don't respond or relapse, but there are still yawning gaps in what is available versus what ought to be.
Remaining involved in research after Adam died was relatively easy once I stepped back into it after 18 months or so away from everything. It’s science, numbers, probabilities, statistics, anonymised cohorts and groups. The reality of each individual child always one-step removed.
Since joining the board of Solving Kids’ Cancer in 2016, first as Research Director/Trustee and now also Chair of Trustees, the hardest part for me by far has been re-engaging with parents and children going through what we once did. Following stories, becoming invested, waiting for updates, hoping for good news and fearing hearing the worst. It was actually a private connection that started me down such a road initially not the charity, but once I’d been forced to face certain truths all over again there could be no going back.
So it is that I find myself still immersed in the research world not only knowing all the truths and having lived most of the realities, but also desperately hoping for better for children whose names I’ve learned and whose stories I’ve come to follow. Now that research, anonymised though it might be in black and white, has an ever growing list of names, faces, little characters and their stories, that I can no longer “pretend” I’m not acutely aware of. Recently diagnosed, not responding to treatment, in remission, relapsed, on hospice care, dead. And it's a good thing that I can't hide anymore, because pretence and disassembling has no place here.
And what of 2019? I could say we have to do more, be better. Who doesn’t say that? We all do. We have to find better and kinder treatments for children with neuroblastoma. Of course that’s true. But I also think back to something Adam would say to me when I was spouting off about something or other … ‘blah, blah, blah, is all I heard’.
I have one over-arching goal for 2019 and it’s really very simple. To do more than anybody else. More on behalf of those names, faces, little characters and their stories, we’re following. More to honour the memory of all the many children whose lives have been claimed by this insidiously evil disease. More for those yet to be diagnosed, children we will learn of during the course of the next twelve months.
I want us to do things that aren’t being done, things that have never been done; that people either haven’t thought of or has been considered beyond the realms of possibility. I want us to work to help open more trials, providing more options in the UK for children with relapsed and refractory neuroblastoma; either directly through funding, or indirectly through advocacy, influencing and campaigning. I want us to work to be better at joining up what others are funding in terms of lab-based research, or drug development work, to ensure that the most promising agents are moved (translated) as quickly as possible through into clinical trials. I want us to develop more links internationally to make it easier to bring trials to the UK. I want us to work to help improve the standard of care that children with neuroblastoma receive across the UK. I want us to help build processes and infrastructure to be able to accurately provide information to parents and clinicians alike, to be able to monitor progress. Currently, nobody knows what the actual survival rates are for high-risk neuroblastoma in the UK, they’re all bundled up with low and intermediate risk disease in the National Cancer Registration and Analysis Service. Nor does anybody have a truly reliable estimate for the relapse rate for children who reach the end of treatment in the UK with no evidence of disease; everything that is known is based on multinational clinical trials and stored in trial-specific data repositories, and more often than not is reported ‘from the start of XY randomisation’.
Am I crazy? Possibly. Probably. Yet I honestly believe there's an opportunity to do this. The involvement and engagement of our Scientific Advisory Board is verging on unique, mutual trust and respect has been built with UK researchers and clinicians. Our special relationship with Solving Kids’ Cancer in New York, stronger ties with J-A-C-K, and evolving partnerships with other charities around the globe. The knowledge and dedication of our research personnel, heavily embedded as advocates in a growing number of groups and initiatives alongside clinicians and academic researchers. The final ingredient, of course, access to funds. I’m not going to lie nor skirt around the truth; I feel and will always feel for as long as it remains so, an uncomfortableness about our research programme being based largely on unused appeal funds. I know what that means in the majority of cases, I’ve been in the same situation myself. However, as of today that’s where we find ourselves, and we either attempt to make the most of it - for the benefit of children with neuroblastoma now and in the future, or we don’t. Cancer Research UK spent £2M on neuroblastoma last year. Label me whatever you like, but I still believe we can do more with less. It might also be an inconvenient truth to some, but nobody else is working primarily to help children fighting now, nor those diagnosed tomorrow in the literal sense. The quest for more effective and less toxic treatments, an endeavour to which I wholly subscribe and wish for us to contribute to, isn't doing that.
Ultimately, it won’t be for me to decide how well we do in 2019. However, I do promise anybody reading this that however far we do or don’t get, it will not be for lack of trying.
Whatever else 2019 is I hope that it brings with it good news, better times, and is kinder to many friends than 2018 has been. I hope more than anything else that it brings better health to those children in treatment, and continued good health to those in remission. To those like me whose children are no longer with them, I hope that 2019 has meaning and purpose, and brings with it at least moments of pleasure and enjoyment.