A brain tumour diagnosis changed Luke’s life, spending long periods in hospital and facing new and significant challenges once home. As a member of Cambridge Children’s Youth Forum, the Stevenage teenager is using his experience to improve children’s healthcare for future generations.
In the summer of 2020, twelve-year-old Luke was diagnosed with a brain tumour. It came after months of headaches and double vision. His energy levels were low, he was constantly napping and no longer had the enthusiasm to play his beloved football.
Over the following months, Luke underwent two operations. The first was called transsphenoidal surgery, a seven-hour operation where instruments were inserted into his brain through his nose. Around three quarters of the tumour was removed. This left Luke with some medical complications, including adrenal insufficiency and an affected pituitary gland, but with the right medication, he was much better.
Luke went back to school to a hero’s welcome and life returned to some sort of normality. But later scans showed the tumour was growing and further treatment would be needed.
The second surgery was more complex and invasive. A nine-hour craniotomy removed almost all of the tumour, but Luke was extremely poorly afterwards. “He didn’t bounce back in the recovery room in the same way,” says his dad, Peter.
Luke remembers nothing of his craniotomy but remembers afterwards struggling to sleep because of noise on the ward. At Cambridge Children’s Hospital, single en suite rooms will allow patients and their families privacy and peace, something Luke says will make a big difference.
Soon after the operation, it became clear that Luke’s hypothalamus, the part of the brain that produces hormones to control body functions like sleep, temperature and hunger, had been damaged. Luke now has hypothalamic obesity which causes constant hunger and weight gain. Additionally, he has neurodevelopmental challenges, such as struggling to manage his emotions and feeling exhausted. He has regular MRI scans to ensure his tumour hasn't regrown.
Despite all this – and because of this – Luke is throwing his efforts into helping others. As a member of Cambridge Children’s Youth Forum, he is shaping how the new hospital will look, feel and care, including the hospital school, the transition into adult services, teenage spaces, and how to best communicate with young patients.
A holistic approach to care means Cambridge Children’s Hospital will support the whole family, including siblings. Luke’s younger brother, Ryan, was unable to visit him in hospital due to Covid restrictions. “This experience is something that’s happened to Luke that Ryan has no idea about,” says Peter.
In hospital, Luke did online learning, just like what children all over the country were doing at the time. However, going back to his mainstream school after the second operation was extremely difficult. Maintaining friendships and making new ones was so much harder. Struggling to keep up with what other students were doing seriously impacted Luke’s mental health.
Read about our work to design Cambridge Children's Hospital school (opens in a new tab)
When I went back to school everyone expected me to the be the same boy I was before - before everything had happened to me. They didn’t expect that I would have changed, and they didn’t change to support my new needs, which made it hard to cope.
Luke
Peter and Suzanne fought to get Luke the SEND support he needed, but it wasn’t easy. He’s moving to a new school for sixth form, which has been far more accommodating and they are all feeling positive.
“If Luke had lost a leg, he probably would have had a completely different experience," says Peter, "But because he has a brain injury and his scars are hidden, people don’t know it’s there.”
Cambridge Children’s Hospital will aim to treat children closer to home, wherever possible. Luke needs ongoing care and still has many routine appointments at Addenbrooke’s Hospital and locally, meaning he misses school and his parents miss work. Peter says a lack of joined-up technology to support communication between all the different organisations involved in his son’s care is also posing challenges.
It’s all very well having appointments locally but if it isn’t using the same application and computer software then actually there is a disjoint in the care. Improving this would make communication sharing easier for all the teams.
Peter, Luke's dad
Touching on their memories of food in hospital, Peter and Luke agree this could have been better. Often mealtimes coincided with a doctor’s visit, so meals would go cold and soggy. Peter says he and Suzanne would bring in homecooked meals to heat in the microwave.
Read about our Food, with Care vision (opens in a new tab)
You’re trying to care for a sick child. You’re stressed. You’re upset. You’re not sleeping properly because it’s noisy. You need nourishment.
Peter
Building the first specialist children’s hospital for the East of England requires many people to be involved. Having the voices of young people, like Luke, at the forefront will help ensure we get it right.
If you would like to join one of our Youth Forums or our Parent Carer Voice, then head over to our Collaboration page.