Clinical trial gives new hope to paediatric patient William and his family

In May 2013 at just four months old, William was diagnosed with a glioneuronal tumour, a rare form of brain cancer. Today his family shares his story to help raise awareness of the disease during Childhood Cancer Awareness Month.

William pictured above.

Following William’s diagnosis and after a complicated operation that caused him to lose almost all of his vision and develop hydrocephalus, he was placed on chemotherapy and eventually referred to Dr Lynley Marshall, Head of the Oak Paediatric and Adolescent Oncology Drug Development Unit at The Royal Marsden.

William’s mum, Ursula, says: “We were running out of options. Our oncologist knew Lynley and informed us of a clinical trial at The Royal Marsden. We were relieved to find out that we met the criteria and started the trial in September 2016.”

William was put on a trial for an ‘inhibitor’ drug treatment that aims to manage the progression of his cancer and prevent it from spreading further. For him and his family this has offered many benefits, including fewer side effects that are more manageable and allowing them to spend more time together.

 

The care we receive from our team at The Royal Marsden is amazing...They always go above and beyond to help us with anything we need.

Ursula, William's mum

Ursula says: “This trial has had a huge impact on our lives. In the first year after William’s diagnosis, we spent a total of 106 nights in hospital, but it’s now been a year and a half since he has been an inpatient. He really enjoys being able to go to school on most days, which means my husband and I can go to work. He is almost never ill, and the trial doesn’t affect his appetite either. It’s about as normal as our lives can be, and we are just so grateful.

“The care we receive from our team at The Royal Marsden is amazing. From a parent’s point of view when you are told your child has cancer, your mind goes to a dark place; but I have found that I can really lean on them. They always go above and beyond to help us with anything we need. If William needs something from one of the other hospitals, they make it happen. If ever I call or email, they are always quick to respond and extremely supportive. Even though treatment can be challenging, William has grown to trust them. He knows their voices and can identify them by their watches and rings.  

The Paediatric Drug Development Unit has done more for us than we ever could have imagined. The feeling at The Marsden is so different to anything we have experienced before. No matter what happens, there is always a discussion about what we can do next. Their commitment to continue making progress and learn more every day gives us hope, and that is something we hold on to.”

 

Supported by The Royal Marsden Cancer Charity 

Supporters of The Royal Marsden Cancer Charity have enabled the Charity to help improve the patient experience for children and their families. The Charity contributed £16 million to the cost of the Oak Centre for Children and Young People when it was built and have since funded the creation of break-out spaces such as the Pandora parents’ lounge and outdoor play areas.

The Charity raises money solely to support The Royal Marsden, a world-leading cancer centre. It ensures Royal Marsden nurses, doctors and research teams can provide the very best care and develop life-saving treatments, which are used across the UK and around the world. From funding state-of-the-art equipment and ground-breaking research, to creating the very best patient environments, The Royal Marsden Cancer Charity will never stop looking for ways to improve the lives of people affected by cancer.