A mum has captured the stark impact of brain tumour diagnosis through a series of heartbreaking photos of her little boy during his treatment.
Jessica Mitchell began chronicling the changing appearance of her son Dylan in May 2014 after he was diagnosed with medulloblastoma – the most common form of brain tumour in children.
Dylan was just two when he was diagnosed with the disease and finished his first round of chemotherapy in December 2014.
But within two months the tumour returned, spreading so aggressively in his brain and spine that the only option was a course of intensive radiotherapy and further chemotherapy.
Now, after four operations, 90 rounds of chemotherapy, 31 sessions of radiotherapy and 66 general anaesthetics, Dylan’s parents have been told he has “no active disease”.
But the tumour has not been cured.
It may recur, but either way Dylan, now four, faces long-term health problems and reduced life expectancy because of the aggressiveness of the disease and its treatment.
Jessica’s photos capture Dylan as he loses his hair during the chemotherapy and radiotherapy, while his face starts to swell massively due to steroids.
Jessica, of Aylesbury, Buckinghamshire, 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.”
Dylan’s experience is one of several which feature in a report from The Brain Tumour Charity released this week called ‘Losing My Place: The Reality of Childhood with a Brain Tumour’.
The report is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis.
In the report, Jessica, who lives with her husband, Ed, and their three sons – speaks about the impact of Dylan’s illness on her whole family.
She said: “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“But my oldest son, who is six, has become more and more withdrawn because Dylan takes all of our attention.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 hardest parts of Dylan’s diagnosis at such a young age was his inability to communicate or comprehend what was happening to him.
She added: “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.”
And now the family faces anxiety and uncertainty about Dylan’s future.
Jessica added: “He is never going to do the normal things that boys do.
“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.”
The Brain Tumour Charity survey found that 84 per cent of children and young people who responded said their illness made them feel lonely.
A further 70 per cent revealed they struggled to do things outside the house.
And three out of 10 reported changes to their personality.
Of the parents and carers surveyed, almost three quarters said their child’s brain tumour had a moderate or severe impact on their own mental health.
And 90 per cent said they felt lonely as a result of their child’s diagnosis.
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.”