Memory Wall

James Jones

17 Years Old

My son James was 16 when he was diagnosed with GMB and 17 when he gained his wings (I hate that phrase, but it is better than the alternatives!).

James had been suffering from headaches and I was convinced that it was due to the amount of time he spent playing FIFA on his PS4. On the 8th March 2017 I took James to the doctors as he had also started to feel dizzy, the doctor examined James and suggested that we go to the eye hospital, following a further eye examination we were told that James had some swelling behind his eyes and we were instructed to go over to the hospital which was located on the same site for an CT scan. By 6pm on the same day we were ushered into a family room and told that James had a brain tumour.

On the 17th March 2017 James had his first craniotomy, the surgeon removed 8.9cm tumour which was located in his left frontoparietal lobe. When we were told that James was out of surgery I remember running down the corridor towards the intensive care unit praying that he would have no deficit from the surgery, scared that he may not be able to speak or move, I burst into the room much to the nurses surprise and the first words James said to me were “Mom I’m starving” I had never been so delighted to hear those words. James then sent a simple snap chat to his friends which read “James 1 – Tumour 0” it was this fighting attitude that kept James so positive throughout his illness. Not once did he ever complain or say why me, he fought his illness every step of the way and never let it define him in any way.

James recovered from his surgery really quickly and we were so optimistic, he was young, fit healthy he had come through the surgery it was surely plain sailing from here, unfortunately that was not the case, we returned to the hospital for the results of the pathology report  which confirmed he had an high grade glioma (GBM4), We were all devastated by the news but once it had sunk in, we were adamant that James would beat it. Paige, James sister researched every protocol you can think of, we had him on all sorts of supplements and diets to ensure his immune system was as strong as possible. James breezed through his radio and chemo therapy and then went onto take temozolomide for 5 days out of every 28 for six months.

We also had second and third opinions from UCH in London and the UCSF Medical Centre California. Given the research that Paige had done and how well James was pre and post-surgery, we were sure that this wasn’t a GBM as they are usually so debilitating, and James had none of the symptoms others with the same disease had.  We received the results which re-confirmed the original diagnosis.

James scans remained stable and he used this time really well, he went on holiday with his friends, went to football matches, concerts, parties you name it he did it. We went to Lanzarote just before Christmas and James was really well which continued into the New Year. Just before James 17th Birthday he became sick and started to get confused, he was rushed to hospital and an MRI revealed that two new tumours approx. 2.5cm and 3.2cm, this was devastating news given that we had received a clear scan 4/5 weeks before. James had further surgery to remove the tumours the day before his 17th Birthday. Again, James made a quick recovery and we decided to ramp up the alternative treatments as much as possible, James started a course of repurposed drugs from Care Oncology London, we were willing to try anything and everything, but our options were very limited.

James continued to live life to the full then in May 2018 he became sick again and was admitted to hospital, an MRI showed significant disease progression and the doctors advised that there was nothing more that, they could do to help James. Our world fell apart again but we had to keep going to make sure that we were strong for James.   He was placed on palliative care and given days/weeks to live.  We choose not to tell James the truth, it was of paramount importance that we made sure James last few weeks were happy and carefree and I truly believe that this is why James stayed with us for approx. 6 weeks after the prognosis, he never gave up.  James fell asleep at home on 16th July surrounded by his family, he was peaceful and felt no pain and for that we are extremely grateful.

James had a full life albeit way to short he was loved by his family and friends, over 300 people attended James funeral which is testament the funny, kind, caring individual he was. As a family we are determined to make sure that we do everything within our power to help raise money to find a cure for this awful disease and if our support can change things for just one person then it will be worth it.