Carrie Wright’s daughter, Lucy, was diagnosed with neuroblastoma in August 2018. She writes on participating in the international MiNivAN clinical trial and offers advice to others faced with making decisions about their child’s treatment.
Before her diagnosis, Lucy was a happy, healthy eight-year-old girl. She loved school, and was very active, enjoying gymnastics and swimming. She’d had very few health issues and her school attendance was almost 100%. But in the summer of 2018, in the lead up to the holidays, she started to become withdrawn and quieter. She complained that she was tired, and was also losing weight and quite moody at times.
We visited the GP and A&E a few times, but it wasn’t until I pushed for more tests to be done and asked for a referral that Lucy’s cancer was initially diagnosed at Royal Blackburn Hospital. This was then confirmed at Royal Manchester Children’s Hospital as stage 4 neuroblastoma (high-risk).
Having started the first stage of treatment in September 2018, Lucy’s scans indicated that she was refractory. This meant she was resistant to chemotherapy, and that the 11 rounds of chemo she’d received had little effect on her cancer. We had to find treatment that didn’t involve chemotherapy and so the MiNivAN trial was presented to us as an option.
We opted into the trial mainly because of the combination of therapies being used. Though MIBG therapy was still relatively new, it had shown promise in treating neuroblastoma, while nivolumab is an established immunotherapy treatment in adults. MIBG is hard on a child as they’re isolated following treatment due to radioactivity levels, but nivolumab is an outpatient treatment and its side effects are minimal, which meant Lucy was able to live as normal a life as possible in between doses.
We’d seen presentations by Dr Juliet Gray, the trial's chief investigator, and were lucky enough to be able to speak to her before making any decisions. We also had the support of a national panel who agreed that these treatment combinations may help Lucy. We had to decide pretty quickly as treatment had stopped once Lucy’s refractory status had been confirmed. The responsibility of making such decisions is overwhelming, but we had every confidence in the panel and in Dr Gray.
After completing the trial Lucy still had some remaining disease, although it was much improved. She went on to do a further round of MIBG therapy before standard radiotherapy and anti-GD2 immunotherapy. We went on to a further trial in the USA - the DFMO study - travelling to North Carolina every 90 days for two years. Lucy was declared NED (no evidence of disease) almost three-and-a-half years after diagnosis. She turns 13 at the end of this month and is doing incredibly well, now at high school full time and loving life!
My advice to other parents faced with difficult decisions about their child’s treatment and care is to read as much as you can, where possible. If statistics are available, then read and understand them. And ask questions, both of your oncology team and of other families. We’re all happy to share our knowledge and experience of treatment if it helps!
Dr Mark Gaze, co-investigator on the MiNivAN clinical trial, says:
Almost everything we know about the value of different treatments comes from clinical trials. The knowledge gained about what works and, importantly, what doesn't work, has contributed to gradual stepwise improvements in results, and often a reduction in side effects. International collaboration allows trials to finish quicker, bringing advances to children sooner. So, we strongly encourage parents to consider entering their children into suitable trials when appropriate. It’s the best way we have of offering innovative treatments, and it brings closer the day when more children with cancer will be cured.
From Contact magazine issue 96 - Autumn 2022
