Raising vital funds for life saving research.
Jude was diagnosed with osteosarcoma in his right arm when he was 11. He was a really, really sporty child. He did swimming and gymnastics and could throw a ball further and with more accuracy than any 11 year old I know. One day he came home from a sports club and said he had thrown a ball but it didn’t go where he wanted it to. He also had a bit of pain but there was nothing to see, there was no bruising. Over the next 10 days, the pain increased and it was keeping him awake at night. We took him to the GP initially and he thought it might just be a sports injury. But the pain was increasing and then we saw some swelling. We took him to the walk-in clinic at the local hospital and the doctor saw a shadow on his X-ray and he knew straight away what he was looking at. That night he was admitted to Manchester Children’s Hospital for more scans. It was about three weeks after his first pain that we got the diagnosis of bone cancer. It was very, very quick.
Because it was bone cancer, Jude had to have a biopsy in Birmingham at the orthopaedic hospital. That took a week to come back and it confirmed that it was osteosarcoma. He then started chemotherapy at the Royal Manchester Children’s Hospital. Devastatingly, he had many secondary tumours on his lungs. We knew he had a tough fight ahead, but we had hope that if anyone could make it, Jude could. He had two rounds of chemo and then surgery to remove his humerus and a bone in his shoulder. He had a titanium prosthetic bone to replace his humerus. The surgery was very tough and Jude found it hard knowing he would never have full use of his arm again, but was grateful they had managed to save his arm as they had considered amputation. He did his best to think positively and he started looking at what Paralympic sports he could do when he was better.
During his many, many weeks in hospital he did his best to help the other children; he would talk to them about his feeding tube which many children find very difficult. He was passionate in raising funds for BCRT. He made Hama bead designs for all the staff and patients at the RMCH. He made beads to order for family, friends and school. This could be a long process as he often could only use one arm. He wanted to make treatments better as he had been so poorly with extensive mouth ulcers and skin lesions over his hands, elbows, heels and feet. He knew it was an under-funded cancer and treatments hadn’t changed since the 1970’s.
After his surgery he had four more rounds of chemo. We hoped he would have some time to recover from the brutal weeks of chemo before he had surgery to first one and then the other lung to remove the secondary tumours. Within weeks of finishing he started getting arm pain and swelling. Scans showed he had tumours growing again to his arm and the tumours in his lungs had also started to grow and spread and were too widespread and too near major vessels, making surgery impossible. His consultant said it was ‘like a runaway train’. He tried a trial chemotherapy at Birmingham Children’s Hospital but it failed and we made the decision to bring him home, make memories and look after him until the end which we knew were just a few weeks away.
Jude’s first symptom was in February 2017, diagnosed officially in April 2017 and he died in February 2018. It is incredibly difficult. We miss him every day. There’s a big hole in our lives. Jude loved life, he was a real presence, always smiling always in the thick of anything happening. He was a lovely boy and we just miss him. He has three younger brothers who are missing their amazing and brave big brother.
When we were thrust into this terrible world of childhood cancer we assumed that Jude would have the very latest treatments available, but we soon realised that for bone cancer, there are no latest treatments. No new treatments have been developed since the 1970’s and the survival rates have not improved either. The treatment regime is brutal and has terrible long-term effects such as hearing loss, infertility, heart and kidney damage. We just want to see the same improvements in outcomes and treatments that there have been found for other cancers, to help other patients diagnosed with bone cancer like Jude. Supporting the work of The Bone Cancer Research Trust means everything to us.
We thank you and appreciate your time to read Jude's Story
Paul, Helen, Finlay, Noah and Elijah
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