'No-one should have to go through this' - Parents tell of two-year-old's battle with aggressive cancer
PUBLISHED: 08:24 07 January 2019 | UPDATED: 22:14 10 January 2019
Harry Deeba is facing the hardest battle of his life at the age of just two years old.
Last year the youngster was diagnosed with stage four high risk neuroblastoma, a cancer that forms in nerve tissue, affecting around 100 children each year.
Harry’s battle started last year in January. Throughout the 2017 Christmas period, his parents Carly Howes, 32, and father, Ali Deeba, 38, a landscape gardener, had been taking him to their GP after Harry “was not himself”.
Miss Howes, from Fakenham Road, Taverham, said: “He was restless at night, was always tired and not very playful.
“He stopped eating and became very clingy, we though it could be part of separation anxiety.
“The GP told us four times it was a virus due to the time of year but over Christmas he wasn’t interested in his new toys and by the new year his tummy looked swollen.”
Harry, who was one at the time, was taken to the Norfolk and Norwich University Hospital where the 16cm cancerous tumour was found growing in his kidneys. Miss Howes added: “The journey has been rough, really hard. No child or parent should have to go through this. No-one should have to go through what Harry has been though.
“At the start we were just in shock. It took a long while before we were even able to talk to people about it.
“The cancer is hard to cure as it is so aggressive. But if he was to relapse it would be even harder to cure.”
Harry will be going to Addenbrooke’s Hospital, Cambridge, to undergo a further two scans to see if the radiotherapy has worked and stopped the active disease.
If the cancer returns there is just a one in 10 chance of survival. A trial vaccine has been created in New York, USA, which Harry could take part in but the opportunity will cost £239,000.
The family have begun working with the charity Solving Kids’ Cancer to help Harry get the treatment through fundraising and a donation page.
Miss Howes said: “If a child does relapse it is mainly palliative care which we don’t want to get to. We want to try everything we can to make sure it doesn’t come back.
“With the fundraising starting it has been overwhelming and amazing how kind people have been.“
To be able to take part in the trial in New York patients must be in remission. If the money is raised Harry will take part in the trial over the course of a year with seven injections.
For more information go to solvingkidscancer.org.uk or visit Harry’s Facebook page.
Harry has had to have a large amount of treatment to try to beat the aggressive form of cancer.
After being admitted to Norfolk and Norwich University Hospital it was the start of a long process.
Miss Howes said: “We stayed on the ward that night, not that we got any sleep. I laid in the hospital bed sobbing and holding Harry tight, fearful of what would happen next.”
The next day the family travelled to Addenbrooke’s Hospital, Cambridge, where Harry’s condition deteriorated.
Miss Howes added: “Once admitted, Harry went down hill quickly, he needed oxygen, had a very high heart rate, he slept a lot and cried in pain when awake, his tummy had swollen.
“How had we missed a tumour the size of a ball growing in our beautiful boys tummy?”
Throughout the year Harry has gone through chemotherapy, stem cell harvests, an eight-hour surgery in Southampton to remove the tumour and a stem cell transplant with Harry being isolated for a month during which he turned two.
Harry’s big sister Isobel
As Harry has been going through treatment his big sister Isobel, five, has been missing him.
Harry loves playing with and annoying his sister and Miss Howes says that she has been very brave.
Miss Howes said: She was around her nanny and grandad’s playing, but little did she know she would not see mummy, daddy or Harry again for a long while.
“She has been amazing. She has now been living with her grandparents a lot while we are at hospital with Harry.
“She had never slept away from home before but then suddenly she was having to live with them.”
Miss Howes and Mr Deeba have stayed at Addenbrooke’s Hospital with Harry for long periods while he has undergone treatment.
During this time Mr Deeba would visit her every time he had the opportunity.
Miss Howes added: “She has coped amazingly and fortunately we haven’t had to worry too much about her.”