Mum’s photos show impact of childhood brain tumour

Charity report highlights Dylan’s battle

The stark impact of a childhood brain tumour diagnosis has been captured by a mother who photographed her young son every month as he was treated for the disease.

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. It is being launched today (Monday June 13) at the start of the International Symposium on Pediatric Neuro-Oncology in Liverpool.

Among the children and young people who responded to the survey:

-          More than eight out of ten (84%) said their brain tumour had made them feel lonely;

-          Seven out of ten (70%) 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% said they felt lonely or isolated as a result of their child’s brain tumour diagnosis;

-          95% of those with more than one child said siblings’ lives had been affected by the diagnosis

In the report, Jessica Mitchell – who lives in Aylesbury 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 ten 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 onto 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;

-          Taylor, 14, whose tumour has left him with life-threatening damage to his pituitary gland;

-          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.

Ends

For further information please contact:

Polly Newton, PR and Media Manager, The Brain Tumour Charity

DD: 01252 418191 | 07990 828385 polly.newton@thebraintumourcharity.org

Notes to editors

About the report 

The findings reported here are taken from the Life With a Brain Tumour project conducted by The Brain Tumour Charity in partnership with Alterline, an independent research agency. In total, 282 people participated in the children and young people’s component of the study. Of those, 274 responded to the survey, twelve undertook in-depth qualitative interviews and five completed a seven-day reflective diary.

The interviews took place between 26 November 2015 and 22 January 2016 and the interviews and diaries were completed between 10 and 21 March, 2016.

Three sets of respondents took part in the survey:

-          young people aged 14-24;

-          parents or carers of children and young people from birth to the age of 24;

-          bereaved parents or carers of children and young people who were diagnosed between birth and the age of 24.

About The Brain Tumour Charity
Registered Charity No. 1150054 (England and Wales) SC045081 (Scotland)

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families. It funds pioneering research to increase survival, raises awareness of the symptoms and effects of brain tumours and provides support for everyone affected.

The Charity’s goals are to double survival within 10 years in the UK and to halve the negative impact that brain tumours have on quality of life.

It adheres to nationally-recognised accreditations and best practice guidelines for every area of its work.

The Charity funds an extensive and diverse portfolio of research across the UK with the aim of doubling survival and reducing long term harm through improving the understanding and complexities of brain tumours, better diagnostic techniques and new treatments.

The Brain Tumour Charity offers a comprehensive support and information service for anyone who is affected, including a support and information line, Information Standard accredited fact sheets, online peer-to-peer support and a dedicated Children and Families Service.

It funds and promotes the UK-wide HeadSmart campaign, raising awareness of the signs and symptoms of brain tumours in children and young people to make earlier diagnosis a reality. Earlier diagnosis will reduce long-term disabilities and save lives.

In just three years, HeadSmart has reduced averaged diagnosis time from 9.1 weeks to 6.7 weeks.

Find out more at: www.thebraintumourcharity.org

Members of the Association of Medical Research Charities, The Information Standard, The Helplines Partnership and the Fundraising Standards Board.

Brain tumours – the facts

• Brain tumours are the biggest cancer killer of children and adults under 40.
• Over 10,600 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that’s 29 people every day.
• Over 5,000 people lose their lives to a brain tumour each year.
• Brain tumours reduce life expectancy by on average 20 years – the highest of any cancer.
• Just 19% of adults survive for five years after diagnosis.
• Brain tumours are 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.
• Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £500m is spent on cancer research in the UK every year, yet less than 2% is spent on brain tumours.

Polly Newton, PR and Media Manager, The Brain Tumour Charity.

DD: 01252 418191 | M: 07990 828385 | polly.newton@thebraintumourcharity.org