Post-treatment and potential long-term effects

The Virdee family

Reuben is a happy nine-year-old who enjoys playing Fortnite, football and riding his bike. He is the oldest child to parents, Kulwant and Jess, and loves spending time with little brother, Hari, and baby sister, Jia.

In 2016 Reuben was diagnosed with high-risk neuroblastoma. After completing treatment in 2018, his family received the amazing news that he was cancer-free. His family decided to fundraise to take him to New York to enrol on the bivalent vaccine clinical trial, in the hope it would keep his neuroblastoma away. Reuben completed the trial in 2019 and remains in remission.

Reuben’s mum, Jess, shares her experiences of post-treatment and her thoughts on potential long-term effects:

"Nothing prepares you for hearing that your child has cancer. It's never something as a parent you think you'll have to deal with. I didn't even really know children got cancer.

"After every scan and test, results just got more and more bleak and some days it was very hard to have any hope that he would survive."

Emotional, mental and physical impact

"There is such an unknown about long-term effects. In the early days of diagnosis we were just focused on him surviving the next round of treatment; it was such a milestone to reach 'the end'. But the truth is there is no end. The effects of enduring such gruelling treatment at such a young age still have an impact today: emotionally, mentally and physically."

"When we were first told that Reuben's scans showed 'no evidence of disease' there were the initial feelings of elation and celebration. However, the fear quickly crept back in that the cancer could return and every hospital appointment still fills us with 'scanxiety'."

"We have always wanted to acknowledge the 'wins', whether that be feeling well enough for a trip to the hospital ward playroom, or more recently hearing from his consultant that he has reached the five-year 'all clear' mark. There are a number of 'red flags' like tummy pain and aches in his bones that will always make us think the worst, but we are all so thankful that neuroblastoma no longer consumes every waking thought and we are able to look towards his future with hope.

"Both Vicky and Hayley in the Family Support team have been incredible at supporting us; we know we are part of the Solving Kids' Cancer UK family and able to reach out to them at any time. I have had the opportunity to connect with other parents in similar positions and that has been invaluable. Having opportunities like the Family Fun Day give us all a chance to meet up with the network of families we have been in touch with for years. Some of the families we have only spoken to virtually before so it's really nice to meet up in person."

Community and peers

"Every family is different in terms of how much involvement or support they would like so it's about striking a balance. We are keen to move forward and allow Reuben to grow up and thrive without the constant reference back to his diagnosis. But at the same time nobody understands what we have been through, and continue to go through, like the neuroblastoma parent community. So for us, we will always want to be a part of it.

"In the future, we hope charities like Solving Kids’ Cancer UK continue to provide opportunities like parent forums and family fun days. I also hope there will be chances for Rueben to meet those in a similar position to him if he feels like he wants to reach out and talk to peers in the future."