Jamie's Brain Tumour Story

A sickness bug was going round

Jamie was happy eight year old boy, very cheeky, confident and always smiling. In early October 2023, Jamie came home from school feeling sick and complaining of a headache. We thought it was just a sickness bug, as it was going around. The next morning, he woke up with a huge headache and nausea, unable to keep food or drinks down and painkillers weren’t getting rid of the headache. After a chat with 111, we took him to A&E, where they diagnosed him with a bad case of a stomach bug and dehydration. Over the next few days, Jamie felt better and returned to his usual self.

Suspected migraines

Two weeks later, Jamie experienced the same symptoms, so we took him to the GP. After a long discussion, the doctor referred him to a specialist with suspected migraines. Jamie carried on with his normal activities – school, playdates, and swimming. However, the headaches became more frequent and intense. On Christmas Day, after bouncing excitedly on a bed and opening Santa’s presents, the headache started again. We gave him some Calpol and decided to get some fresh air with a walk. That’s when more symptoms appeared – jaw pain, a very achy left leg, and difficulty moving the leg. We got back home and took him back to A&E.

The worst news

After many hours of waiting in A&E, the doctor finally decided to do a CT scan. We were told there was an abnormality on Jamie’s brain and he needed to be transferred to another hospital. After many more hours we were taken by ambulance to the other hospital, where we received the worst news a parent can hear – Jamie had a massive brain tumour. He was put to sleep and rushed into a full-body MRI. His surgeon told us that it was only a matter of hours and he wouldn’t have been able to save Jamie’s life. Surgery started at 3am on Boxing Day, and we didn’t see Jamie until 5pm that day. It was the scariest time in our lives, but seeing him call out “Mummy, Daddy” was such a relief.

We couldn’t even give him a hug

The surgeon managed to drain a cyst that was part of the tumour and relieve the pressure on Jamie’s brain. They also removed a portion of the solid tumour for analysis. The first week in the hospital was heart-breaking and soul-destroying, with Jamie on a heavy dose of morphine, hooked up to many monitors, and lines in so many parts of his body. We couldn’t even give him a proper hug. But Jamie bounced back, started eating, and grew stronger. The biopsy revealed a benign tumour called CPP. There was talk of letting us go home to recover and returning in a few months for another surgery to remove the rest of the tumour.

A sudden deterioration

Jamie was back to his cheeky self, building Lego, walking around, and chatting as always. However, on 8 January, his condition suddenly deteriorated. Fluid was building up in his brain, causing high pressure, and we couldn’t wake him up. He was rushed into another emergency surgery to insert an external ventricular drainage (EVD) tube to drain the excess fluid. The surgeon decided to remove the rest of the tumour sooner than planned. On 12 January, Jamie underwent a 10-hour surgery, which was successful – they removed the entire tumour. We thought we were nearing the end of our journey. But we wouldn’t have been more wrong.

Our world collapsed

Jamie’s brain struggled with the extra fluid, and the EVD tube had to stay open to manage the pressure. The surgeon decided to put in a shunt, leading to another surgery on 25 January. Everything looked promising, and we were about to go home when we received news that the biopsy on the remaining tumour was unclear, and a second opinion was needed. We left the hospital on 31 January after five long weeks. Jamie recovered well with some physio and we were so happy to have him home and celebrating his 9th birthday in February. However, shortly after, we received a call confirming the worst – it was cancer. Our world collapsed again.

Being away from home

Since then, it’s been a whirlwind of appointments, meeting new specialists, and discussing treatment plans. Jamie started chemotherapy at the end of February 2024, spending five days in the hospital receiving drugs, then three weeks at home recovering. The first cycle went well, with no side effects except for hair loss. Jamie was scared but bravely went to the barber to shave his head. The next round of chemotherapy in March was tougher, causing sickness and loss of appetite. But Jamie continued to smile and even managed to return to school for a while. The next stage of treatment began at the end of April with six weeks of proton beam therapy. Being away from home was the hardest part, but we made the most of it and kept busy. We explored London, had fun at the zoo, and went to see The Lion King the musical and Madagascar too. We also met the actors after the show.

Back home, but not done yet

Now, we are back home for a bit of rest. Jamie is back at school full-time, loving life, and running around with friends. However, the journey isn’t over yet. We still have four cycles of chemotherapy to go, starting at the beginning of July. Jamie’s strength and resilience continue to inspire us, and we remain hopeful for a healthy future.

Anna, Jamie’s mum, June 2024

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