My son Harry was born full term on the way to hospital in the car. All seemed well for the first few weeks. But as the months passed it became obvious that something wasn't quite right. He had developmental delay, struggled to feed, gain weight and had a few minor health issues, but nothing too significant. It was presumed he was likely to have a genetic condition but no name could be given (or still has been given). Harry continued to make progress in his own time and started main stream school just after his fourth birthday.
It was during a routine appointment when Harry was five and a half that a doctor thought his liver was enlarged and a scan was arranged for the next day. At this stage I wasn't too worried, I thought they were just being cautious.
During the scan the next day I didn't look at the monitor I just concentrated on keeping Harry calm and still. Afterwards I was told to take Harry straight to the children's unit. The doctor told me Harry had a tumour the size of a melon where his right kidney should be. It was almost certainly cancerous and likely to be a Wilms' tumour. I felt like I had been hit by a bus. That moment will haunt me forever. Harry had had no obvious signs of cancer, maybe a little off his food and a cough at night but nothing I was worried about. I often think should I have seen something, but the truth is I didn't.
We were told to go to Bristol Children's Hospital oncology department the following day. It was one of the longest 24 hours of our lives. After telling my husband he started to let close family and friends know. We were so scared.
The next day Harry had MRI scans, ultrasound scans, chest X-ray, blood test and lots of poking and prodding. I just kept looking at him running around in the playroom thinking how can there be so much wrong with him. The following few days passed in a blur. Harry had a biopsy taken of the tumour and a Hickman line inserted into his neck. This allowed permanent access to his bloodstream so that chemotherapy and other drugs could be given without the need for needles. Seeing him come back from theatre with the Hickman line was a huge shock. To start with Harry 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.
The news continued to get worse as more results can back. It was confirmed as a Wilms’ tumour but graded as high risk, it had also spread. As well as the very large primary tumour Harry also had multiple tumours in both lungs. He started chemotherapy less than a week after the doctor first suspected something was wrong. 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 the next six weeks. He spent most of that time in hospital due to infections and side-effects. Our lovely sparky boy seemed lost. After six weeks Harry was rescanned prior to surgery. The tumour had shrunk to the size of a lemon but the tumours on his lungs were the same. Harry had a nine hour operation to remove the primary tumour. He was unrecognisable when he came out. He looked so pale and weak. The first few days after his surgery 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. Two weeks after surgery Harry started radiotherapy and continued chemotherapy.
The radiotherapy was very hard on Harry, he had to lie still everyday 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. Unfortunately Harry's body didn't cope very well. The side-effects caused nerve damage in his legs so he couldn't walk unaided. It also caused heart damage and one of the drugs had to be stopped altogether. He had to have the dose reduced because of the amount of infections he had. Harry suffered from infections every time he had chemotherapy. Some of the infections were so severe they caused septicaemia and we nearly lost him more than once. Harry became so weak he couldn't eat. He had a gastrostomy tube to administer all of his feeds, fluids and medication.
Harry 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 and they were fantastic. It was the hospital school service that realised he also had ADHD and helped 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 as many families we had met sadly didn't get that far. Yet we were also frightened. Our safety net had been taken away from us. We'd made many friends on the ward and the nurses felt like family.
Life will never be the same again, we now have a ‘new normal’. Very slowly we have had to piece back together our shattered lives. 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 carers leave for 18 months, so financially we were struggling. 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, he has even self harmed when particularly stressed. He struggles to be left alone and needs one-to-one support in school full time.
Harry is now 29 months into remission. But that fear never goes away. He is scanned every 12 weeks to look for relapse and will be at lifelong risk of secondary cancer. The drugs that kill cancer cells can also cause cancer. 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 afterwards. Harry has also been diagnosed with chronic kidney disease, chronic lung disease, an immune deficiency as well as many other health issues. Harry may have developed these health issues anyway, although they may have been caused by his treatment, we just don't know.
We are incredibly proud of Harry. He has been through so much yet continues to smile and enjoy life. 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 him and cherish every moment with him.
Emily, Harry’s mum