
Help to give my son Jack Webb a fighting chance
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Hi, our names are Chris and Sue Webb and we are fundraising to give our 34 year old son, Jack, at least a fighting chance after bravely managing and battling a brain tumour since 2016 when he had a massive seizure on a family holiday. We rushed him home to Cambridge where he was diagnosed with a Grade 2 astrocytoma brain tumour. He was then in the second year of a Sports Science degree and was a Level 3 Personal Trainer.
All this had to be put on hold as he entered the Standard of Care brain tumour treatment. He had a very good awake craniotomy in 2016. Then for three years with our help he managed to live independently whilst managing a very rigorous ketogenic diet, comprehensive fitness training, mature-based mindfulness and endless research on what was happening in molecular and precision medicine. As his Mum and Dad we were in awe of his resolve and strength.
In 2019 we all decided that he should come and live at home as the stress of living with the variable symptoms and the endless grind and tensions of MRI scans, Jack needed more support in daily living and mobility as he could no longer cycle. In particular, Jack and Sue, my wife, started to visit and stay in nature reserves in Norfolk. In Bank Holiday 2022, they enjoyed a week there but Jack felt a bit strange at times. On returning home Jack suffered three massive tonic-clonic seizures in a row, one so violent that it ripped his left shoulder away from his socket and tendons.
EVERYTHING THEN CHANGED!
He had to have immediately two operations to try to reattach his shoulder and then a second craniotomy with his first surgeon. As ever he did a superb job and is very much a Henry Marsh surgeon - 'DO NO HARM'! However, the histology analysis revealed that Jack's tumour had become an aggressive Grade 4 according to WHO classifications - or a glioblastoma as more widely understood. Given this grim diagnosis Jack decided to go forward with the only real option under Standard of Care - chemotherapy and radiotherapy - which are very indiscriminate in their collateral damage and affect on braincells that actually are doing heavy lifting for the rest of the body!
Jack endured months of these two 'therapies' and we managed to arrive at Xmas and enjoy a quiet family affair. But just after this Jack had another tonic-clonic seizure and it was clear that the tumour was aggressively active and growing, The only Standard of Care option was 10 more days of so-called targeted radiotherapy. Our son has had significant brain swelling as a result, enough to prevent him from going on a trial at the Royal Marsden to test a combination of drugs (IceCap Trial).
Our son is unrecognisable now, as the tumour/radiotherapy has caused him to lose some of his hair and, more importantly, control and strength in his left arm and his left leg is dragging and unresponsive. It breaks our hearts but as ever Jack is trying to do things to rehabilitate himself or just tie his shoelaces! That is why we are fundraising to get the funds required to buy into some of the new drugs and vaccines available such as Avastin and DCVax. If this story strikes a chord we would be so grateful for any donations that you might make. My Wife Sue is an active participant in Brains Trust and Macmillan and we would share any experiences and lessons as widely as possible. Jack, of course, would be grateful to continue his eight years struggle to control the beast.
Organizer
Chris Webb
Organizer