Raising vital funds for life saving research into primary bone cancer.

Joshua's Story

Aug/Sept 2016: Joshua age 11. Josh's symptoms started off quite subtle - a limp when playing cricket and pain in his knee after strenuous activities, like running and swimming, that we put down to him being so active. In-fact, he competed in a biathlon in July and qualified for the British Schools' Modern Biathlon Championships, his leg was hurting after this run (which I put down to a sports /muscle injury) and only 6 weeks later he was diagnosed, at which point his disease had already spread beyond the primary tumour site. So, it was subtle but fast growing. We had one misdiagnosis of muscle issues, with Josh being so active, but it was only a week before I took him back and he was referred for an X-Ray straight away & the journey progressed very quickly from there. At the point of diagnosis Josh had a large swelling that seemed to appear almost overnight. I also noticed him sleeping in the car during the day, something he never usually did. Looking back, I now know these were all signs.

Josh's journey through chemotherapy and multiple operations:

September 2016: Josh began front-line treatment of methotrexate, cisplatin (What we learnt was nick-named as 'Sick Splatin' as this one made people feel very sick) & doxorubicin (The Red Devil - Bright Red chemo).

Nov 2016: After grueling chemotherapy, loss of his hair & much sickness, we found out that Josh's treatment had failed and the cancer had spread to his lungs and we are told there were no survivors with his disease progression.

Dec 2016: Joshua age 12. Joshua begins a clinical trial of etoposide, ifosfamide (Well known to cause hearing loss and many react badly to this one in terms of seizures etc. - Josh luckily avoided both of these side effects... he was pretty robust and determined to fight) and a trial inhibitor drug called lenvatinib - miraculously against all odds, it stabilises his tumours.

June 2017: Joshua has high level above knee amputation. He recovers from this extremely well - after all what's amputation in the face of death!

Approx. Dec 2017: Joshua age 13. Scans start to show questionable changes, but we agree he is still stable.

June 2018: We discover that Josh's cancer is now progressing on the trial, so he is kicked off it.

July 2018: Josh starts a new immunotherapy treatment based on some of his genetic results.

August 2018: Josh's latest treatment has failed cancer has spread to various places, including his skull.

August 2018: Josh has radiotherapy, to save his spinal cord and try to prevent more damage to his brain & he starts oral chemotherapy.

September 2018: Josh has responded to radiotherapy and has oral chemotherapy.

December 2018: Josh age 14. Josh goes to watch his little brothers school nativity and complains of some funny feelings when walking. The next day Josh is paralysed from the waist down. Horrific but a blessing in disguise in that no pain could be felt from below his waist. It caused varying toilet issues that no 14-year-old boy would want to go through. Josh took it on the chin, but my big strong minded 14-year-old was reverting back to an almost baby like time having himself cleaned by me. I'm not too proud to share this reality... but what these kids go through needs to be heard.

January 2019: Josh spent his days playing on his Xbox and watching TV series - We especially loved Outnumbered. The last series he ever watched. He loved to have cakes baked for him and lived on Lidl luxury yoghurt but struggled with his swallowing as the tumour in his skull grew into his throat and stole his voice and smile. Pain was extremely well managed by his team (Consultant, POONS nurses and community nurse). At this point I remember Josh saying that he thought he had a good 3-4 months left. He was always a fighter and a believer of hope. Josh had to stop his oral chemotherapy as he was having fevers and his bloods were struggling too much.

February 2nd 2019; Joshua George Williamson passed away in the night... his brothers, his dad and myself sat beside him for several hours after he had passed and said our final good-byes. He'd won the fight in the end, his mind was fiercely strong until the end, no pain could ever touch him again.

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“Thank you for reading Joshua's story”. - Anna & Stephen, Joshua's Mum & Dad

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