Reuben

Reuben’s story

Back in late 2016, Reuben was waking in the night with tummy pain and fevers for around six weeks. After an ultrasound, a suspicious mass was found in Reuben’s tummy, and his parents were told he had stage 4 high-risk neuroblastoma.   

Treatment started immediately and Reuben received his first course of chemotherapy just one week later. Reuben spent his third and fourth birthdays, as well as countless other special days, in hospital receiving treatment, which included surgery, stem cell harvest, high-dose chemotherapy, stem cell transplant, 14 radiotherapy sessions and five rounds of immunotherapy. He also had countless bone marrow aspirates, trephines, MRI, CT and MIBG scans, ultrasounds, blood and platelet transfusions.  

"One of the hardest decisions was putting Reuben through the gruelling treatments needed to save him, not really knowing what the long-term side effects would be," Reuben's dad, Kulwant.

Reuben completed frontline treatment and received the amazing news that he was cancer-free in January 2018. 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.

Relapse and further treatment

In April 2024, during a routine MRI scan, Reuben’s family were told the devastating news that he had relapsed, after being in remission since early 2018.

After receiving BIT chemotherapy treatment in Oxford, in August 2024 Reuben was enrolled on the Minivan trial in Southampton, a trial part funded by Solving Kids’ Cancer UK. During the trial Reuben unfortunately needed support from PICU where he was put on a ventilator and needed medications to help raise his blood pressure. While recovering from these side effects he suffered a further set back due to the inflammation caused by the immunotherapy drugs.

After discussions with his treating team, Jess and Kulwant withdrew him from the trial after completing 2 cycles, as it was identified that Reuben was reacting to the immunotherapy treatment. While still in Southampton, Reuben began to complain of headaches and blurred vision. After finishing dinner one evening his blood pressure raised significantly and he experienced 3 seizures, which required emergency sedation and ventilation.

His seizures were caused by a condition called Posterior reversible encephalopathy syndrome (PRES), an inflammation in his brain because of his body's reaction to the antibody drugs. Reuben now takes anti-seizure and blood pressure medication regularly and has frequent platelet transfusions to minimise risk of bleeding. The inflammation should go down as his body recovers.

Reuben will continue to have scans and appointments at Oxford to work out the next treatment steps.

_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Reuben and his family. If Reuben no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Reuben, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.}