“James started feeling unwell about a month before his diagnosis. He was getting headaches, so I took him to A&E where we were told it was stress-related. I couldn’t really understand why this was being given as a reason, and I knew James didn’t have anything to be stressed about.

We came home and tried to continue with life. James’ headaches went away but they were replaced with back pain and James couldn’t get comfortable. We made an appointment to see a chiropractor as we knew something wasn’t right. The appointment didn’t resolve anything, and we took James back to A&E where I was told again that there was nothing wrong.

After being off school for a while, James made it back for a day, but then he was sick. James was never sick, so this really worried us.

We went to see the GP who told us James had glandular fever.  We also made an appointment to see the optician so they could look at James’ eyes and rule out other conditions. Again, they told us that everything looked fine.

On Sunday 1 Dec James woke up telling us that his hands felt tingly, and his feet felt like he was walking on sand.  I thought ‘I can’t go back to A&E they already think I’m neurotic’ so I called and explained James’ symptoms. They asked us to go back and this time I wasn’t leaving until they could find out what was wrong with our son.

James passed all the neuro observations, and the hospital agreed to admit him after a blood test was done. The following day James had an MRI. On returning to the ward, the Doctors asked us to go into a private room.  It was the news any parent would dread hearing – we were told James had a brain tumour and hydrocephalus and he needed urgent surgery that evening.

James’ surgery was at St George’s Hospital in London, and we had follow up appointments at the Royal Marsden.  James’ tumour was inoperable so within a month of his diagnosis we flew out to Oklahoma in the USA for proton beam therapy to help shrink the tumour. James received 30 blasts of proton, and in December 2014, the tumour finally started reducing in size.

We returned to the UK, where regular hospital appointments became our ‘new normal’. We came across Momentum when we were in Epsom Hospital and we had a visit from one of their Family Support Workers to discuss what help they could offer us. Just knowing that there was someone on the end of the phone offering support meant a lot, and Momentum also arranged a few fun things in between treatment which was a great distraction from hospital life.

The location of the tumour affected several different areas of James’ body and resulted in very complex health issues. He had to miss a lot of school which was such a shame as he was so bright. James was a student at Wilson’s grammar School in Wallington.

Every year around May/June time, James would become very unwell and would be admitted to hospital because he couldn’t cope in the warmer temperatures. James struggled with a sensation of thirst, and we became his constant reminder to drink, especially in the summer. It was quite a challenge to control, and he would end up in hospital due to high sodium levels. A treatment plan was never put in place to help him with this, and we were never told how serious this condition was. Sadly, on 2 Sep 2022 aged 22, James passed away due to the complications of his tumour. We were on the Isle of Wight on holiday at the time.

St. Mary’s Hospital on the Isle of Wight have been incredibly supportive to us as family, and I find it a comforting place. Support provided by Momentum’s bereavement service, Echoes, has also been a huge help. 

Remembering James at Christmas – he loved Christmas and from an early age, the memories we made with him give us so much comfort today. When decorating the Christmas tree, he loved the smell of tinsel. Tree decorations, especially the handmade ones from school, had to go on! The sound of him singing his heart out at the school nativity and carol service, waiting for the John Lewis advert – still to this day, nothing beats the bear and the hare, Somewhere Only We Know. We have created so many family traditions, and I must keep them going. Making Christmas cakes, our gingerbread house decorating event, James playing Jingle Bells on his custom-made Santa bells suit, and making sausage rolls on Christmas Eve. On Christmas morning, James would shake his presents, hoping to hear the sound of Lego bricks. James was our Christmas spirit who we love and miss dearly. Thinking of you all this Christmas.”