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Harry’s story: our lovely sparky boy

Nothing prepared Harry’s parents for the day they were told that their son, aged just five-and-a-half, had a tumour the size of a melon where his right kidney should be. Mum Emily recalls that devastating moment: “I felt as if I had been hit by a bus and that moment will haunt me forever.”

Harry was born full-term on the way to hospital in the car. All seemed well until a few months after his birth, Harry was struggling to feed and gain weight and had a few minor health issues. He was diagnosed with having development delay and a genetic condition but no name was ever given for this.

Harry progressed, started school just after his fourth birthday and it wasn’t until a routine doctor’s appointment a year and a half later when the doctor said he thought Harry’s liver was enlarged and arranged a scan for the next day. Emily comments: “At this stage I wasn’t overly worried; I thought they were just being cautious.”

The worst possible news

Harry was sent straight to the children’s unit. “I was given the devastating news that Harry had a tumour that was almost certainly cancerous and likely to be a Wilms’ tumour. Harry had had no obvious signs of cancer, maybe a little off his food and a cough at night but nothing I had been worried about. I often think should I have seen something, but the truth is, I didn’t,” recalls Emily.

“Then followed the longest 24 hours of our lives. We had to go to Bristol Children’s Hospital oncology department the following day. My husband and I were so scared.”

Harry had MRI and ultrasound scans, a chest X-ray, blood tests and lots of poking and prodding. “I just kept looking at him running around in the playroom wondering how can there be so much wrong with him?” says Emily. The following days were a blur for the family. Harry had a biopsy taken and a Hickman line inserted into his neck (enabling chemotherapy and other drugs to be given without the need for needles). Emily recalls vividly: “Seeing Harry come back from theatre with the Hickman line was a huge shock. He hated the line and tried to pull it out, but his older brother came to the rescue by calling it his “Fireman Sam” line as it looked like hoses.”

Cancer had come in and tore our lives apart within days

Harry's mum, Emily

The news continued to get worse. It was confirmed as a Wilms’ tumour, graded as high risk, and it had spread. As well as the very large primary tumour, Harry had multiple tumours in both lungs. He started chemotherapy less than a week after the doctor first suspected something was wrong.

Emily recalls the heartbreaking moment when Harry started his treatment: “Cancer had come in and tore our lives apart within days. My husband and I cried as we watched the first dose of chemotherapy being infused. Within hours Harry was very ill. He had chemotherapy one day a week for six weeks and spent most of that time in hospital due to infections and side-effects. Our lovely sparky boy seemed lost. We had mixed news when Harry was rescanned prior to surgery to remove the primary tumour: it had shrunk to the size of a lemon but the tumours on his lungs were the same.”

The nine-hour operation took its toll on Harry “He was unrecognisable; he looked so pale and weak. It was so hard seeing him in pain and not being able to do anything to help. I couldn’t even cuddle him properly as there were so many tubes,” remembers Emily vividly. Two weeks after surgery, Harry started radiotherapy and continued chemotherapy. “The radiotherapy was very hard on Harry, and he had to lie still every day on his own under a huge machine. Most adults would struggle with this yet somehow he managed it.”

Over the next 12 months, Harry received three days of chemotherapy every three weeks, but the side-effects on Harry’s body were severe: he suffered nerve damage in his legs so he couldn’t walk unaided; damage to his heart; and one of the drugs had to be withdrawn. Every time Harry had chemotherapy he suffered from infections, so much so that he had to have the dose reduced. Some of the infections were so severe they caused septicaemia and Harry’s life was at risk on more than one occasion.

Harry became so weak, he couldn’t eat and had to have a gastrostomy tube to administer all his feeds, fluids and medication. He was unable to go to school for 18 months due to tiredness, infection and always being in hospital. He had some tuition from the hospital school service who were fantastic. It was the hospital school service, in fact, that realised Harry had ADHD and helped Emily to get it formally diagnosed.

Harry’s last day of chemotherapy came with a mix of emotions. Obviously we were pleased get to the end of treatment – many families we had met sadly didn’t get that far – yet we were frightened. Our safety net had been taken away from us. We’d made many friends on the ward and the nurses felt like family.

Rebuilding shattered lives

Life will never be the same again, and we now have a ‘new normal’. Gradually, we have had to piece back together our shattered lives. We were also struggling financially as during Harry’s treatment my husband lost his job, as he needed so much time off work to help me care for Harry and his older disabled brother. I had been on unpaid carer’s leave for 18 months. His brother also suffered, never knowing who would be picking him up from school and spending his weekends and holidays on the cancer ward.

Since treatment has finished Harry has suffered with high anxiety levels, and he has even self-harmed when particularly stressed. He struggles to be left alone and needs one-to-one support in school full-time.

In remission

Harry is now 29 months into remission, but that fear never goes away for the family, says Emily. “It’s like cancer is a huge wrecking ball that comes in and destroys everything in its path and then leaves a ticking time-bomb behind in its wake.” Harry is scanned every 12 weeks to look for relapse and will be at lifelong risk of secondary cancer. The drugs that kill cancer cells paradoxically can also cause cancer.

We enjoy and cherish every moment with Harry

Harry's mum, Emily

Harry has also been diagnosed with chronic kidney disease, chronic lung disease, an immune deficiency, and many other health issues. Harry’s family will never know whether he would have developed these health issues anyway, or whether they have been caused by his treatment.

“We are incredibly proud of Harry. He has been through so much yet continues to smile and enjoy life,” says Emily. “He puts up with a huge number of hospital appointments but he doesn’t mind. We don’t know what the future holds for Harry, but we enjoy and cherish every moment with him.”

Family stories