Renly's story

“Renly was diagnosed with high-risk neuroblastoma when he was two years old. It was just four short weeks from diagnosis to Renly passing away... but that’s typical of his journey; he arrived too soon and left too soon.”

Renly’s mum Sarah shares their story.

Losing weight and flu-like symptoms

“Renly was born at 27 weeks in September 2016, weighing a tiny 780g - less than a bag of sugar. He had overcome so much due to complications from his premature birth, including over 100 days in hospital and major surgery to remove all of his large intestine.

Renly having fun in the bath

We started to notice that Renly wasn’t himself when he was two years old. He had just had another bout of bronchiolitis in late October/November 2018 and the doctors just said he was just taking his time to bounce back from this recent illness.

As his parents, we knew different. Over the next six weeks I went back and forth to the GP, dietitian, his neonatal/gastro consultants and A&E, and they all continued to say the same thing.

At this point Renly was losing weight, something he couldn’t afford to do, as prior surgery for necrotising enterocolitis meant he’d had a large portion of his intestines removed and therefore didn’t absorb nutrients as a “normal” child would.

We spent Christmas 2018 in Bath with my parents and we noticed a swelling in Renly’s abdomen on the Boxing Day. We decided to leave our daughter with family and take Renly back to Watford General Hospital to see his doctors again. The logistics of everything was a real stress for me in the coming weeks, particularly when Phoebe went back to school after the Christmas break, but we had a great support network.

At the hospital, we were asked different questions this time, particularly about whether Renly was walking. He had lots of blood tests and scans, before a doctor came that night and told us that they had found a tumour. We were in complete shock. Before noticing the bump, Renly had only presented symptoms like that of a more common flu-like illness, which we were later told was normal for neuroblastoma.

Treatment then an official diagnosis

“The doctors began treatment before making an official diagnosis, as they were that sure it was neuroblastoma. The tumour was very large - as big as a grapefruit or small melon. ”

Within 24 hours we were at Great Ormond Street Hospital (GOSH), where the pace was completely different. The Oncology doctors introduced themselves within five minutes of us arriving and over the coming days began to explain that they suspected Renly had neuroblastoma.

The doctors began treatment before making an official diagnosis, as they were that sure it was neuroblastoma.

The tumour was very large - as big as a grapefruit or small melon. It was impacting on the organs in his abdomen, pushing everything upwards, and his kidneys in particular were suffering. We were told that the tumour could’ve developed in a matter of weeks.

Renly was officially diagnosed with Stage 4, high risk neuroblastoma a few days later, his age bracket being something that placed him in the high risk category. We were told that he would need various courses of chemotherapy and radiotherapy to try and shrink the tumour, before surgery was even an option. We were looking at a time frame of about 18 months.

Declining health and new challenges

Renly enjoying the garden

If Renly was well enough in himself he would be discharged from GOSH and we could return for treatment, but his general health was declining, particularly his lungs.

Renly only managed two rounds of chemotherapy, struggling in particular with the hyper-hydration that is required to balance the toxicity. There were questions too over how much of the medicine he was absorbing due to his past medical history. He quickly fell behind schedule for his treatment. 

The doctors picked up that Renly had fluid on his lungs that needed surgery to drain. During this surgery, he aspirated in his ventilation tube, which meant the fluid from his stomach went down onto his chest.

Subsequently he needed to go back to the paediatric intensive care unit (PICU) afterwards as he remained on the high dependency ventilator.

Renly sadly didn’t make improvements from this point. It seemed that each day there was something new that his body was challenging him with (low oxygen saturation, high blood pressure, calcium). Eventually the consultants told us that we had a very difficult decision to make about his treatment, and that they would support us either way. By proceeding with treatment we could encounter risks such as cardiac arrest, and if this happened, his body would not cope.

Renly passed away, surrounded by love

“As his parents we wanted to be with him at the end, something we felt like Renly was trying to tell us was near. Renly passed away at 2pm on Wednesday 23rd January 2019, surrounded by love.”

The odds were against Renly, so we made the difficult decision to take him off the ventilator. As his parents we wanted to be with him at the end, something we felt like Renly was trying to tell us was near, and we did not want to put him under any further distress. Renly passed away at 2pm on Wednesday 23rd January 2019, surrounded by love.

The team at GOSH were incredible. Renly was in the hands of some of the kindest and most knowledgeable doctors in the world. The team always provided us with as much information as possible, kept their communication candid and involved us in his care. We were also supported with accommodation, which meant we could be close to Renly at all times.

We had a meeting with the team at GOSH about eight weeks after Renly died. We had consented to further tests to in order to better understand the biology of Renly’s neuroblastoma, and in the hope that this could help others. The consultant told us that it was very likely that Renly was in the 5% of cases whereby, unfortunately, treatment doesn’t do much as the tumour was so aggressive.

What will always stay with us is the speed at which everything happened. It was just four short weeks from diagnosis to Renly passing away... but that’s typical of his journey; he arrived too soon and left too soon.”

How you can help

We don’t receive any government funding and rely on your generous donations to continue our fight against neuroblastoma.

• Please donate online today and help fund vital research to develop kinder, more effective treatment for children like Renly.

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