Mum's little hero
When five-year-old Jack Morley swoops into the room with his red wellies on announcing he wants to be a fireman, mum Lisa smiles with pride. Jack is already her little hero and she feels lucky to have him.
In 2006, the Morley family faced a terrible shock. Lisa, husband Mark, daughter Imogen and 14-month-old Jack had returned from a lovely holiday in Cyprus when Jack became unwell. He vomited on and off for a few days so Lisa thought he had a tummy bug. But he became weak and very floppy, and his eyes would roll to the back of his head. “Never in a million years did I think it was what it was,” says Lisa.
Her young son was taken to hospital where he became very unresponsive. “Nurses were trying to put needles into his tiny arms, and he didn’t even cry,” says Lisa. “I was sure this wasn’t right.” Jack slept through the night and for most of the next day with Lisa growing increasingly concerned, now thinking it was meningitis. “I was beside myself with worry,” she says. “I knew my baby boy wasn’t well.”
Jack had an emergency scan which showed a sizeable lump on the back of his brain. Lisa asked if it was a brain tumour and the doctor held her hand as he replied. “I went numb and felt sick to my stomach,” she recalls. “Mark and I just grabbed hold of each other. Nothing can prepare you for the news that we had just heard.”
Within minutes, Jack was on his way to a hospital that specialised in paediatric cancer. Within 24 hours, he was diagnosed with cancer. Lisa and Mark were told their son had a rare form of medulloblastoma – a brain tumour, which children under three are particularly vulnerable to.
Jack had extensive brain surgery to remove the tumour in an operation that lasted over six hours. It took him six weeks to recover, including spending time in intensive care followed by contracting post-operative meningitis. He needed physiotherapy and occupational therapy several times a day as he was unable to move.
He went on to have three types of intensive chemotherapy every two weeks because the tumour was so aggressive. Jack dealt with the first round very well but became weaker and weaker. “I didn’t think his little body could take it,” says Lisa. “We took loads of photographs of him then in case he didn’t make it.”
After three months, Jack started having radiotherapy every day for six weeks during which time he lost his hair, eyebrows and eyelashes. “My poor little boy,” remembers Mark. “He looked like a skinned rabbit.” Then Jack had further chemotherapy medication for six months, which made him constantly exhausted.
Lisa and Mark were back and forth to the hospital, often staying overnight in their own room on the ward. They took turns visiting their son so there was always a parent at home for big sister Imogen. Jack stayed in hospital for months.
His treatment ended in July 2007 – exactly a year after diagnosis – but this brought new concerns for his parents. “We had been warned at
the very beginning that the outcome of his cancer could mean never walking or talking, and that he could have very severe special needs,” Lisa says, “but I pushed and pushed for all the support I could and he made amazing progress.”
Lisa wanted Jack to go to the same school as Imogen so wrote to the local education department. He was offered a place with a one-to-one helper, fitted with special orthotic boots and given a walking frame. Within months he was walking. He had speech and language therapy, and things went from strength to strength.
Last July, Jack’s scans were all clear for the third year in a row. He has to be scanned annually until he is around 18 to make sure the cancer hasn’t returned.
“We met so many lovely families, who haven’t been as lucky as us,” says Lisa. “You just don’t think of young babies having cancer. It’s only when you’re put in our position and you have to live on a cancer ward that you see the true extent, you realise how many people are going through this as well.
“That’s why it’s really important that more is known about this rare form of cancer. We are pleased to support Action Medical Research and the work they are funding, which could help other families like us.”
Action Medical Research is funding a pioneering study into what causes life-threatening brain tumours in children under three. With support from the Freemasons’ Grand Charity, we awarded a Research Training Fellowship to Dr Chris Howell, who is dedicated to finding better treatments for the condition.
Dr Howell knows how devastating childhood cancer is. He was diagnosed with a form of leukaemia at 13 and spent three to four months in hospital. “We lived about 40 miles away from the hospital so I experienced time away from my family,” he says. “It was a very unpleasant time for all of us.”
This experience inspired him to attend medical school and he went on to work in paediatrics, including paediatric oncology (the study of diseases that cause cancer). “I enjoyed that oncology had a very systematic approach,” he says, “with clinical trials always asking if treatments could be made better, and biological studies, all aimed at improving treatments for patients.”
Around one in 10 of the children who die from cancer in the UK has a brain tumour called medulloblastoma. Dr Howell is determined to change things for the better and is investigating whether a tumour’s genetic make-up influences the severity of the illness and a child’s survival chances.
“With leukaemia, we are now 20 years further on than when I was treated and can tell the difference between types and individualise treatments better, thanks to discoveries in genetics research,” he says.
“We haven’t got that far with medulloblastoma. That approach of drilling down to the genetic basis will take us forward in the same way and show us good results. I have every confidence we could take it forward and have similar effects on treatment improvements.”