Jessica Mitchell began to record the changing appearance of her son Dylan in May 2014, soon after he was diagnosed with medulloblastoma – the most common form of malignant brain tumour in children – at the age of just two.
Dylan and his family are among those whose experiences feature in a report out today (June 13) from The Brain Tumour Charity called ‘Losing My Place: The Reality of Childhood with a Brain Tumour’.
Dylan’s first round of chemotherapy ended in December 2014 but within two months the tumour had recurred, spreading so aggressively throughout his brain and spine that the only treatment option was a course of intensive radiotherapy alongside further chemotherapy.
Last month, after a total of four operations, 90 rounds of chemotherapy, 31 sessions of radiotherapy and 66 general anaesthetics (necessary in order to deliver some of his treatments), Dylan’s parents were told he has ‘no active disease’.
But the tumour has not been cured. Whether or not it recurs, four-year-old Dylan faces long-term health problems and reduced life-expectancy because of the disease and its treatment.
Jessica’s photos show Dylan losing his hair as the chemotherapy and radiotherapy take effect, while the steroids he was given caused his face to swell significantly.
Jessica said: “I started taking the photos to show how brave Dylan was. One day I want to make a book of them for him to have when he’s older.
“But I also wanted to show why we need more research into brain tumours and more understanding of the harm caused by the disease, which is so clear from The Brain Tumour Charity’s report.
“We were told by doctors that the only treatment available to save Dylan’s life would do this awful damage to our little boy. That’s not a decision any parent should have to make.”
‘Losing My Place: The Reality of Childhood with a Brain Tumour’ is based on a unique survey of almost 300 young people and their parents following a childhood brain tumour diagnosis.
Among the children and young people who responded to the survey:
• More than eight out of 10 (84 per cent) said their brain tumour had made them feel lonely;
• Seven out of ten (70 per cent) said they had difficulty doing things outside the house;
• Three out of ten of those with symptoms reported changes to their personality
Among parents and carers:
• Almost three quarters said their child’s brain tumour had had a moderate or severe impact on their own mental health;
• 90 per cent said they felt lonely or isolated as a result of their child’s brain tumour diagnosis;
• 95 per cent of those with more than one child said siblings’ lives had been affected by the diagnosis
In the report, Jessica Mitchell – who lives with her husband, Ed, and their three sons – speaks about the impact of Dylan’s illness on her whole family.
She says: “Our youngest son was only 10 weeks old when Dylan was diagnosed, so he knows no different.
“But my oldest son, who is six, has become more and more withdrawn because Dylan takes all of our attention. He is suffering at school.”
One of the most difficult aspects of Dylan’s diagnosis at such a young age was his inability to communicate or comprehend what was happening to him, says Jessica.
“He could tell us ‘ow’ and point to where it hurt but we could never be certain what was causing him pain.
“When a child is older, you can explain to them: ‘You have to take this medication because it will make you feel better.’
“With Dylan, it got to the stage where we had to pin him down to give him his medication. Sometimes he would stop fighting and lie there sobbing. It was just awful.”
Now the family faces anxiety and uncertainty about Dylan’s future.
“He is never going to do the normal things that boys do,” Jessica says. “He is never going to have the energy to go running and jumping and climbing. He will not be able to have the kind of relationships that other young men have.
“But he is still here, and we hold on to that fact.”
Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “Our report shows the devastating impact of childhood brain tumours – not only for those who are diagnosed but in many cases for the whole family.
“We hope our findings will help to improve understanding of the effects of the disease as well as reducing the isolation felt by so many of those who shared their experiences with us.
“We will use the evidence in this report as we continue to press for the best possible care and services for all of those affected by a brain tumour.”
Among the other young people whose stories are shared in the report are:
• Hannah (16), who talks about her frustration at the effect her tumour has had on her performance at school and her ongoing difficulties with language;
• Amber (10) whose symptoms prompted her to tell her cousins that she wanted to die;
• Josh (16) whose vision has been permanently damaged by a brain tumour.
Every year, around 400 children from birth to the age of 14 are diagnosed with a brain or central nervous system tumour.
The disease claims more lives than any other childhood cancer and is the largest cause of preventable or treatable blindness in children.
Childhood brain tumour survivors are 10 times more likely to suffer long-term disability than well children. This accounts for 20,000 additional disabled life years for all the children who are diagnosed each year.
For more from The Brain Tumour Charity visit the charity’s website.