Samantha, from Heanor, Derbyshire, suffers from neuroblastoma, an aggressive form of cancer that usually affects children under five. It causes a solid tumour that typically originates in the abdomen. She is confined to hospital and is undergoing her eighth bout of chemotherapy. Hughes’s hair is growing back; Samantha’s will take a while longer.
Just after his daughter was diagnosed last October, Hughes started a website chronicling her treatment. The blog is written as if it were her diary: “Before my illness I sat at home singing along to shows like The X Factor, and with my curly locks, blue eyes and cheeky smile, my family joked I will be a celebrity one day.”
Later it reads: “Round eight of my chemotherapy hit me hard today and I have been very tired, poorly and a little upset. I also have dark circles around my eyes and not looking my best.”
The transformation from healthy, singalong toddler to sick, struggle-along victim is heart-rending. After Hughes appeared in his local newspaper and the tabloids picked up the story last week, site traffic soared. The website received nearly 10,000 hits in 48 hours.
Cancer blogging is becoming a phenomenon. The Vogue journalist Deborah Hutton, who died of lung cancer last year at 49, wrote one, as did Julia Darling, a writer and poet who succumbed to breast cancer at 48. Michael Durham, a journalist who is suffering from leukaemia, wrote of his weblog in these pages last year.
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Many parents of children with cancer are following Hughes’s example. As Sarah Talbot-Williams of CLIC Sargent, a cancer charity, says: “The childhood cancer journey is a traumatic and emotional one. It is great to hear that Samantha and her family are able to share such a personal experience to help support other people.”
Hughes says the blog is therapeutic. “It’s a way of dealing with it and channelling my energy. When she first became ill we sought information from the internet. We were able to contact other parents of sick children and their stories helped us.”
There are other practical reasons for the site. Fewer than 100 children in Britain are affected by this rare cancer each year. Hughes hopes the blog will raise awareness so that other children may be diagnosed earlier.
He also wants to encourage blood donors, since Samantha needs frequent transfusions. If her treatment in this country fails, he may need to seek further surgery in America. “I’m told that might cost £500,000. So the idea that I might need to raise money is always at the back of my mind.” Meanwhile, visitors are encouraged to send money to Georgie’s Fund, a children’s cancer charity.
Samantha’s illness began last summer. She was out of sorts and off solids, drinking only milk. Then Neil, a 32-year-old systems analyst, and his wife Tina, 36, noticed her stomach was swollen. “We thought because she wasn’t eating she was suffering from malnutrition and took her to the doctor.” She was immediately referred to hospital. A large tumour was found.
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The outlook is bleak. Samantha’s cancer is advanced and traces of it have been found in her bone marrow. This week, when the chemotherapy is completed, she will be examined to see if the tumour has shrunk. It will then be removed. This will be followed by stem cell rescue, when some of her bone marrow is removed, treated and reimplanted. She will then face up to 12 weeks in isolation in hospital as her immune system begins to repair.
Tina spends all day with her in hospital, returning home only to sleep. Neil takes over from her, arriving on the ward at 8pm. He climbs into bed with Samantha, waking at intervals throughout the night to take her to the lavatory. He goes back home in the morning to sleep a little, then picks up their four-year-old son Louis from school and gives him tea.
Both Neil and Tina are on compassionate leave from work. “It’s amazing how quickly you adjust,” he says. If Hughes sounds phlegmatic about his duties, it’s because he and his wife have been here before. Nearly three years ago Louis had cancer, too. At 18 months he was found to have a tumour the size of an apple on his lung, also of a very rare sort. The growth was removed and he has made a full recovery.
“We do wonder why it happened to us,” says Hughes. “Doctors told us the chances of two children getting cancer in one family were like getting struck by lightning twice. People say to us, ‘You’re just unlucky’, but I think there is something genetic between us that is going wrong.” Tina has suffered three miscarriages, including a child with Down’s syndrome.
There is not a trace of self-pity in his voice. Between hospital visits, school runs, cooking fish fingers for Louis and the supermarket shop, there simply isn’t time. There are also at least 100 e-mails a day to answer from well-wishers. Kind as they are, the most welcome messages are from parents whose children have beaten cancer. As his blog says, “We all have a positive attitude and will fight this nasty disease — and beat it together.”
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To read the Samantha blog go to www.samanthahughes.info