Reuben was a happy two year old, playing with his friends at birthday parties, attending pre-school and enjoying his new role as big brother to little Hari. In December 2016 when he was really looking forward to Father Christmas visiting, his family’s world was turned upside down when he was diagnosed with high-risk neuroblastoma.
Reuben has since spent his 3rd and 4th birthdays, as well as countless other special days, in hospital receiving treatment. His mum, Jess, says:
“We always struggled to watch adverts on TV about families being told their loved ones had cancer, and never really imagined how it must feel to hear those words. But now it’s our reality – our precious little boy has high-risk neuroblastoma. We became one of those families.”
Neuroblastoma is a rare childhood cancer affecting fewer than 100 children in the UK each year. As in 50% of cases of high-risk metastatic neuroblastoma, by the time Reuben’s primary tumour was found in his tummy, it had already spread to his bones and bone marrow.
The impact has been immense. His dad, Kulwant, says:
“Our family has spent the majority of the last 17 months separated. Reuben has missed out on so many opportunities just to be a child. At the worst times, it’s felt like he was fading in front of our eyes when he’s been silent, unable to gather the energy to make a sound and in too much pain from the side effects of treatment to speak. Despite all of this he keeps us on our toes with his cheeky sense of humour. We’re so incredibly proud of him. He’s endured what no child should have to, fighting every step of the way and showing his fierce strength of character and fighting spirit!”
Now free from the disease, Reuben’s family will take him to New York several times over the next year to receive a clinical trial called the Bivalent Vaccine, with the aim of helping keep his cancer away. Whilst he’s taking part in this trial and for the following year afterwards, he will need a number of additional assessments and scans, plus in the future, it’s likely he will have many long-term medical needs as a result of receiving such harsh and toxic treatment. This is why his family need your help to continue to raise funds for his care.
Back in late 2016, Reuben had been waking in the night with tummy pain and fevers, for around six weeks. His parents made trips to GP, out of hours and A&E services to investigate his symptoms but could not have imagined what they were about to be told.
After an ultrasound, a suspicious mass was found in Reuben’s tummy and his parents were told it was likely that he had neuroblastoma. As tests started, each piece of news seemed more devastating. Reuben’s diagnosis was confirmed as stage 4, high-risk neuroblastoma the cancer had spread to other parts of his body.
Treatment started immediately and Reuben received his first course of chemotherapy just one week later. Dad Kulwant says:
“We were in complete shock and disbelief but felt he was in the most capable hands and we were on a treadmill of treatment to get him better. It was the 19th December and I can still remember sleeping next to him in his hospital bed underneath a brightly lit Christmas tree. Reuben saw it all as a big adventure with presents galore and a new playroom stocked with toys.”
However there were many times through 2017 when he was just too poorly to play, the treatment robbing him of the most basic childhood experiences. Over the last year and a half, Reuben has completed seven rounds of chemotherapy, surgery, stem cell harvest, high dose chemotherapy, stem cell transplant, 14 radiotherapy sessions and five rounds of immunotherapy. Plus countless bone marrow aspirates, trephines, MRI, CT, Mibg scans, ultrasounds, blood and platelet transfusions. His mum, Jess, says:
“We still find it hard to see Reuben’s name on paperwork next to the words ‘stage 4, high-risk, metastatic neuroblastoma.”
Reflecting on the past 18 months, Kulwant says:
“One of the hardest decisions has been to put Reuben through the gruelling treatments needed to save him, not really knowing what the long-term side effects might be. He has been isolated and in the company of adults for most of the last 18 months. He and other children like him who we have befriended along the way, deserve the chance to be a child and play in an environment that isn’t a hospital ward.”
“Friends, family and the community near and far have sent love, thoughts and prayers every day since his diagnosis. There is no doubt that Reuben is one very loved little boy.
We have been so fortunate to be able to focus on the job of being Reuben’s parents while an army of supporters raises funds for him. Solving Kids’ Cancer has been a constant source of support and guidance for us during an incredibly difficult and challenging time. We would also like to be able to raise funds through Reuben’s journey to support the tireless work they are doing to research this disease in the hope of finding kinder treatments and ultimately a cure for neuroblastoma.”
Reuben’s fundraising campaign
High-risk neuroblastoma has a high rate of the cancer returning, and if this happens just 1 in 10 children survive. Whilst Reuben is taking part in the bivalent vaccine trial and for the years afterwards, he will need many additional assessments and scans. Reuben’s family are fundraising for any further treatment and care that he may need in the future, that isn’t available through the NHS.
Supporting Reuben’s fundraising campaign will help ensure his parents are able to give their little boy the best possible chance of beating this disease.
How you can help
There are many ways you can help Reuben: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge; or simply following and sharing Reuben’s story through his Facebook page, @ReubensFight.
Download our free Reuben resources (below) to support your fundraising, and CLICK HERE for even more resources, including fundraising ideas, templates and guidance.
You can make a donation via this page, or if you’d prefer to text donate, text VRDE55 and your amount £1 – £10 to 70070. If you’d like help supporting Reuben’s campaign, please get in touch with the fundraising team on 0207 284 0800