Jake loves playing with his little sister Phoebe, Paw Patrol, Lego and the Incredibles. He bounces on the family’s trampoline, enjoys scooting, dressing up and putting on shows. He’s recently started school and loves it so far, but his attendance is cut short due to treatment, or the risk of infection.

It’s because Jake is battling neuroblastoma, a particularly aggressive childhood cancer. Almost 50% of children diagnosed will not respond completely to standard treatment, or relapse after it, and when that happens, less than one in ten survive.

Jake’s family raised funds in case he needs to access further treatment not available on the NHS, to either keep the cancer from returning or clear the disease if his frontline treatment doesn’t go to plan.

But Jake has now finished his frontline treatment and is showing no evidence of disease so his family are no longer actively fundraising, although the money they have raised for Jake is there for him if he ever needs it.

Jake’s story – diagnosis

Jake’s parents, Hannah and Adam, first noticed something wasn’t right back in May 2017, when Jake was waking up in the night, moaning and crying. They took him to the GP a couple of times, but there was nothing they could find.

Eventually, Jake deteriorated and ended up in Barnet Hospital A&E in July 2017. From there he was quickly moved to Great Ormond Street Hospital (GOSH). This is where his condition was diagnosed. He had stage 4 high-risk neuroblastoma with a tumour near his kidney and further disease spread through his bones and bone marrow.

“Even though Jake had not been well for some time, the diagnosis was so shocking and completely out of the blue. You just never imagine that you will be told that your child has cancer. Our world fell apart. It took us months to even start to process it,’’ say Hannah and Adam.

Jake cuddles his mum

Gruelling treatment

Initially, brave little Jake had eight rounds of chemotherapy. But his parents were told that he had not responded sufficiently to move on to the next stage of the treatment plan. So he had another two rounds of a different chemotherapy. But it was the same story – still making progress, but not to the level needed.

Jake is now classed as having refractive neuroblastoma, which means he has not responded sufficiently to standard frontline treatment. So he’s had lots of additional chemo and three cycles of MIBG therapy, which involved spending three weeks in a lead-lined room in radioactive isolation at UCLH.

He’s also spent seven weeks at GOSH over the summer for high-dose chemotherapy, during which he picked up a complication with his liver. It meant that his waistline expanded by over 12cm.

Jake has had immunotherapy which took six months, and surgery to remove his tumour and kidney. He's now having radiotherapy, but the great news is he is currently showing no evidence of disease.

“Watching your child going through intensive cancer treatment is horrific. Every drug Jake has received has potential long or short-term side effects and he has spent more time in hospital than most people do in their lifetime. However, he deals remarkably well with everything that is thrown at him and he has a happy positive outlook on life. We are lucky that he is no different from any other five-year-old boy in that respect,” say Hannah and Adam.

Follow his journey on their blog
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