It is any parent’s worst nightmare to be told their child is seriously ill and eight days before Robin Samuel’s first birthday, it became reality for Rachel and Nick.
After taking Robin to Barnet hospital, medics conducted an ultra-sound scan after noticing something was wrong with his stomach.
“From that moment everything happened so quickly. We were blue-lighted straight away to Great Ormand Street Hospital before they had finished all the testing,” said Rachel. “They knew what he had needed to be treated right away.”
She and her husband, Nick 39, from Muswell Hill in north London, said they were “terrified” when Robin was diagnosed with neuroblastoma, a rare and aggressive cancer.
Ms Samuel, who works as a communications manager, said: "Robin’s tumour was 10cm in diameter. It was huge, and he is only a small baby. It was wrapped around his aortic artery, so they could not operate straight away, but he had to have chemotherapy."
Luckily, the chemotherapy shrunk the tumour, so it could be operated on and removed.
Parents Rachel and Nick with Robin (Photo: Samuel family)
As of May, Robin has been "cancer-free" and in remission. However, relapse is highly likely for this rare condition, which has only a 50/50 survival rate.
Speaking to the JC, Rachel said: “There is no way to describe it. It is terrifying. You just go into survival mode. On the one hand we are so happy he is okay now, but we live with the anxiety that it is likely to come back, and so we have to do something about it.”
His parents are now hoping to raise £300,000 in order pay for treatment which will give their son the best chance of staying cancer-free.
In the UK, the next step of treatment for Robin, would be to have a high dose of chemotherapy and stem cell transplants to fight against any relapse.
However, this type of chemotherapy would result in serious health problems for Robin, including the likelihood of infertility later in life.
“It seems counterintuitive to put him through something that is going to make him even more sick,” Rachel explained.
"As parents, we want Robin to have a strong start to his life and have a good quality of life going forward. We simply cannot justify putting him through something that would destroy all his natural defences when there is no guarantee it would work long-term.”
Having devoted hours of research to other treatment options, his parents want to take Robin to Barcelona for a less invasive immunotherapy.
Robin was diagnosed with the rare cancer before he was one (Photo: Getty)
Already the 18-month-old has undergone eight cycles of chemotherapy, a stem cell harvest, and a lengthy nine-hour operation to treat the cancer.
Rachel, 43, who has two other children from a previous marriage, said she knew they were doing the right thing when doctors in Barcelona “affirmed our instincts as parents that immunotherapy would be a good treatment for Robin.
“The truth is that one day, this will be offered on the NHS, but is not right now and Robin can’t wait,” she said.
The family has raised over £65,000 of the £300,000 needed to provide five sessions of immunotherapy to give Robin a chance of staying in remission.
Only around 100 children in the UK are diagnosed with neuroblastoma. The most common symptom is a lump in the tummy area.
Rachel, who isn’t Jewish but had been looking into converting before the pandemic and Robin’s illness interrupted her plans, said that they had been “supported really amazingly” by their local Jewish community and the Liberal Jewish Synagogue in St John’s Wood, where Nick’s parents are members.
Robin in hospital (Photo: Samuel family)
Grandmother Nadine Samuel, from Chiswick, told the JC: “We are doing all we can to support Nick and Rachel through this and to ensure a happy and healthy future for baby Robin. He is our darling boy, and it goes without saying that we love him very much."
Rachel said that they had also been “lucky enough to have had support from the fantastic Camp Simcha. They have brought us food in hospital, arranged free transport and organised much-needed days out for us as a family.”
To find out more or to help the Samuel family, visit https://www.crowdfunder.co.uk/p/help-baby-robin-survive-cancer.
