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Jessica’s story

Jessica was diagnosed with DIPG ( a type of brain tumour) on 7th March 2011. Her mum, Lisa, shares her story to raise awareness for childhood brain tumour research.

“Our Jessica was a beautiful, confident and happy little girl who lived her life to the full and had lots of friends. Life changed for Jessica and all those who knew her in March 2011 when Jessica was only 3 years old.

“Jessica’s left eye had started to drift inwards. We weren’t worried about it, we just thought she would need glasses or an eye patch to correct it. We took her for an eye test and the optician confirmed her sight was fine but wanted to know the cause of the squint. He referred her to the Royal Bolton Hospital.

“That appointment went well. We were told again that her eyesight was fine and the squint could easily be corrected but Jess would need a scan to find out the cause. We were given a follow up appointment for two weeks later. In those two weeks we noticed a big change in Jessica. She wasn’t blinking from her left eye very often and she couldn’t close it. She became clumsier, started banging into things and stumbling, and the left side of her mouth was weak. The symptoms came on all of a sudden and we were obviously very worried now.

“We explained our concerns to the orthoptist and he referred her to the paediatrician straight away. Jessica was examined and we were told they wanted to do an MRI as soon as possible. When the consultant came into the room after the MRI, I knew it was bad news. Nothing can prepare you for hearing that your child has cancer. They couldn’t tell us much more and we were blue-lighted to The Royal Manchester Children’s hospital.

An inoperable tumour

“Our worst fears were realised. The following day when we were taken into a quiet room to be told that Jessica had a tumour in the worst possible place. It was in the brain stem. The tumour was inoperable and Jessica’s life expectancy was 9-12 months. There was little treatment they could offer, only treatment to prolong Jessica’s life and not cure her.

“Jessica was started on steroids straight away to relieve some of the pressure on her brain and preparations began so she could start radiotherapy. In total Jessica received 30 fractions over a six-week period. I can’t begin to tell you how proud we were of her. She was so young and would lie completely still with her mask over her face and shoulders, which pinned her to the table so she could have her treatment. During the six weeks, Jess contracted chicken pox, so we had to have a three-day stay in hospital on top of daily radiotherapy sessions. She didn’t complain once. By the end of the six weeks, Jessica was no longer on steroids and her initial symptoms had improved. Weeks later, after a further MRI, we were told that the tumour had reduced by about half the size. We were over the moon.

“In October 2013 we began to see signs that something wasn’t quite right. Jessica’s left eye began to drift inwards again and she was slightly off balance at times. Jessica was referred for an MRI and our worst fears came back. The tumour had started to grow again this time more aggressively than before. We knew there still wasn’t a cure. We hoped that Jessica would be accepted on a new experimental treatment at Bristol but the tumour took hold of her quickly and in a matter of days Jessica became very weak. She was unable to walk, had difficulty moving her right side and couldn’t swallow. Jess was admitted and put on a high dose of steroids and things improved again.

A roller coaster of emotions

“Our only option was to start chemotherapy at this stage. Jess had fought for too long for us just to give up. The next few months were like being on a roller coaster. Jessica would be doing well so her steroids would be gradually reduced and frustratingly she would become unwell again. The chemotherapy and steroids were causing her further side effects and we had many overnight stays in hospital due to getting infections or needing blood products. Jessica continued to be brave through all of this and her strength is what pulled our family through such a difficult time.

“In March we made the decision to stop her treatment. The tumour was continuing to grow with the chemotherapy and we didn’t want her to suffer any more. Jessica became unwell and developed a chest infection. She required 24 hour care so we decided to take her to Derian House children’s hospice. Each day Jessica became weaker and lost the ability to do something else. She could no longer walk, talk, swallow or move any part of her body. The only way she could communicate was with her eyes. She was fed by an NG tube and she didn’t have any quality of life. The cruel thing was that Jessica knew exactly what was happening to her little body.

“This horrendous disease takes away your ability to do everything you usually take for granted but leaves you with your mind. I know Jessica was scared despite our best efforts to comfort her and that is now something we have to live with. Jessica passed away peacefully surrounded by her family on the 1st April 2014 aged only 6 years old. “

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Nancy Dykes

Nancy Dykes

Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.

Watch Story
Prof John Hickman

Prof John Hickman

Why I am a Trustee of CCRF
 
I am a relative of the Larkin family and knew Rosie Larkin ( Friends of Rosie, now CCRF) when she had and then died of neuroblastoma, aged six. At that time, I was a scientist and professor at Manchester University, actively working on the problem of why some cancers do not die despite intensive and toxic therapies.  Seeing Rosie during her unsuccessful therapy and then attending her funeral, besides being emotional, drove me to double down on my own research as well as to support the Charity as best I could as a cancer researcher. I spent over a decade as the Chairman of the Scientific Advisory Board of the CCRF, when the Board moulded policies to ensure that funds raised for research into childhood cancers were distributed only to clinicians and researchers who had the brightest ideas that could impact of cancer medicine for children.
 
My role on the Board
 
As a Trustee,  I hope that my many decades of experience in cancer research and medicine can help the CCRF determine where best the funds that are raised can be invested in cutting edge research and medicine. I am also keen that the CCRF brings together UK and international experts in science and cancer medicine to brainstorm on how best to advance the treatment of childhood cancers.
 
My Background
 
I was a Professor of Pharmacology at Manchester University, working on drug resistance in cancer. I then moved to Paris, where I still live, to head cancer drug discovery at a French pharmaceutical company (Servier). I then headed an EU consortium for six years that brought together researchers from the pharmaceutical industry, universities and biotechnology companies, from all over Europe and the UK, to improve cancer drug discovery. I continue to be active in cancer health policy, publishing in the medical literature.
Katrina

Katrina London

Why I am a Trustee of CCRF

I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.

I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.

My role on the Board

I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising. 

My Background

I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families.  Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.   

Carla

Carla Nuttall

Why I’m a Trustee of CCRF
 
I became a trustee of the Children’s Cancer Research Fund because I believe every child deserves the chance to grow up healthy and with everything to look forward to in life. Like many people, I’ve seen the impact cancer can have on families and I wanted to do something that could make a real difference. This started through my work as an ambassador for Cyclists Fighting Cancer, which supported young people and their families in finding strength, confidence, and joy through movement.
 
That experience shaped my understanding of the challenges families face and the importance of community-led support – but crucially, the clear need for that to go hand-in-hand with targeted research and long-term solutions.
 
This is why I’m so passionate about the work CCRF does and proud to contribute to a cause that gives children and their families, the greatest chance of living a life without limits.
 
My Role on the Board
 
I support CCRF’s mission by bringing my experience in brand, marketing, and communications to the board. My focus is on helping CCRF tell its story in a way that resonates with people – whether that’s families, researchers, donors, or the wider public. I work alongside an incredible team to strengthen CCRF’s voice, build trust, and grow awareness so that more children and families can benefit from the breakthroughs we’re helping to fund.
 
My Background
 
I’m the Executive Director of Corporate Affairs and Marketing for The Growth Company, a social enterprise dedicated to helping people, businesses, and places to thrive through its market-leading insight, employment, skills and business support.
My passion is to help the organisations I work with to communicate with clarity, purpose, and integrity. That’s why I’ve spent my career in strategic communications supporting organisations that want to make a positive difference – CCRF could not fit my sense of purpose any better.