James's Journey with Ewing Sarcoma

14th February 2023 will always be a memorable day for us, this was the day our lives were turned upside down. After months of being fobbed off by our GP surgery blaming pains in James's arm on growing pains and anxiety, we eventually made the decision to take him to Peterborough A&E, and they were shocked by levels of pain he was in, screaming his head off....definitely not normal for a 10 year old! After an xray and blood tests, they still were baffled until another amazing consultant said to do another xray, but this time on his chest, and OMG I could see the xray didn't look good. Turns out he had a massive tumour in his chest wall, several tests and scans later he was transferred to Addenbrookes hospital in less than a week, with biopsies done just a week after finding the tumour. By the end of that week we had the diagnosis.....

Metastatic Ewing Sarcoma, a rare form of bone cancer, that unfortunately has spread to other parts of the body with lesions on his skull, spine, pelvis and thigh bones.

Just a couple of days after diagnosis, James started his chemotherapy. 14 cycles of chemo meaning he was in hospital every other week, then when at home it was daily visits from community nurses having injections to boost his neutrophils (white blood cells that help with immunity) and the occasional blood transfusion when his haemoglobin got too low, aswell as lots of other tests and scans every now and then. During this time he wasn't able to go to school, swimming or his beloved football training, missing out on so much for 6 months bless him.

James has now got to the end of his IV chemotherapy, so hopefully no more long stays in hospital! (Fingers crossed) but as Ewings Sarcoma is a very aggressive fast growing cancer he will now go onto oral chemotherapy to hopefully keep those cancer cells at bay. He still has to have weekly blood tests and scans every 3 months whilst on the oral chemo, but hopefully this won't make him as tired and sick as the IV drugs (again fingers crossed!) He has now started at High School, missing the first couple of weeks, but hopefully he will be able to start doing things a bit more normally again, but we'll see how he is after he starts his oral chemo in the next week or so.

We honestly don't know what his long term prognosis is at the moment as Metastatic Ewing Sarcoma is pretty damn evil with only a 15 to 30% 5 year survival rate, but we have to think positive for James and give him the best life we can.

We didn't think we would ever set up a Just Giving page but everyone keeps telling us it's not for us, it's for James. Plus our oncologist is full of you need to do lots of fun stuff with him and make the most of things whilst we can. Easier said than done right?! Anyway if you want to contribute to this page great, if not we won't be offended! Money raised will go towards a nice holiday for James of his choice, hopefully spring/summer next year all being well, aswell as trying to do as much fun stuff as we can with him (and not on bloomin V.bucks like he would prefer lol!)

Thank You

Jo, Kev and of course the main boy, James xx