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.
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.”