Up until a month before his diagnosis, James was a healthy and active child. Before he became unwell, he enjoyed playing football for a local team and practicing kickboxing. As a passionate football fan, he has always supported Nottingham Forest, and we’re incredibly grateful to the club for their kindness and support.
James first became ill with frequent sickness and headaches. He was being sick several times a day — sometimes up to ten times. Over three weeks, we visited the GP, called 111, went to the out-of-hours medical centre multiple times, and visited A&E.
At first, doctors told us it was migraines, then later suspected reflux. I didn’t know the signs of brain tumours, but I knew something was wrong. I kept pushing for answers until the paediatric team at the hospital finally saw us.
Diagnosis
At the hospital, James underwent an MRI scan, and that was when we found out he had a brain tumour. The cancer had spread to both his brain and spine. The doctors suspected metastatic medulloblastoma but couldn’t provide a formal diagnosis until they completed further testing about a month later.
Hearing this news turned our world upside down.
Treatment
In the weeks following his diagnosis, James underwent several operations.
- The first surgery removed part of the tumour.
- The second involved inserting an external drain to remove excess fluid from his brain.
- In the third, doctors replaced the drain with a shunt that redirected fluid to his stomach.
- The fourth procedure inserted a central line for his treatment.
After his first surgery, James couldn’t walk or move his legs much. He started chemotherapy shortly after his fourth surgery, and two weeks later, he began radiotherapy.
We initially enrolled in a clinical trial, but as James’s movement became more restricted, doctors advised us to start radiotherapy as soon as possible. After careful consideration, we agreed to photon radiotherapy. He underwent six weeks of treatment, needing a general anaesthetic each time, which meant he often couldn’t eat until the afternoon.
About three to four weeks after completing radiotherapy, James began to improve. For the first time in months, we were finally able to go home as a family.
James has a brother, which made spending so much time in the hospital even more difficult. After radiotherapy, James had a short break before starting high-dose chemotherapy. He has since completed four rounds of treatment.
During this time, we spent a lot of time in the hospital due to infections, but thankfully, James responded well. Now, he has started maintenance oral chemotherapy, which will hopefully allow us to spend more time at home. James is excited to return to school and see his friends again. If he remains well, he’ll have MRI scans every three months to monitor him.
Side effects and challenges
James has moderate hearing loss due to chemotherapy. During high-dose treatment, he was very sick, and we had to monitor his weight closely. Now that he’s on maintenance chemotherapy, his eating has improved, but his changing taste preferences still make it difficult at times.
It's hard to put into words the challenges we've faced. Being apart as a family has been incredibly difficult.
Although we don’t live far from the hospital, balancing life at home with a four-year-old who didn’t fully understand what was happening while also supporting James through operations and intensive treatment was extremely challenging.
After his initial surgeries, James was unable to move his legs for months, which was incredibly tough. He has since had to relearn how to walk.
Advice for parents
Take each day as it comes, and try not to think too far ahead.
Accept help from family and friends — gestures like home-cooked meals and childcare support made a huge difference for us during our months in the hospital.
Most importantly, try to keep making happy memories. Even in the hardest times, there are still moments of happiness.
Fundraising
Since becoming unwell, James has shown incredible bravery and determination.
Through his efforts in making personalised bracelets and keyrings, he has raised over £21,000 for brain tumour research. His creations have even reached the King and Queen, who responded with a letter and a donation.