J-Jay’s story

A proud mum has reflected on the incredible strength, spirit and courage her ten-year-old son showed while battling a rare form of cancer. J-Jay Wood, from Colchester, was diagnosed with clear cell sarcoma in 2021.

The tumour was in his pelvis and dug into the base of his spine and left hip, which meant it was impossible to operate. However, he defied the odds and lived for another 18 months, before losing his battle in November 2022.

He underwent various rounds of chemotherapy and, at one point, it appeared the tumour was shrinking. Sadly, that proved not to be the case and J-Jay, mum Marie and dad Michael were put in contact with East Anglia’s Children’s Hospices (EACH).

They spent time at The Treehouse but most of the care and support they received was delivered at home – complying with J-Jay’s wish.

“He wanted to be at home and that was only made possible thanks to EACH,” said Marie, who also has a seven-year-old daughter, Jenna-Mae.

“It wouldn’t have happened otherwise and, from my point of view, just knowing there was someone on the other end of the phone made such a difference.

“Members of the care team came round most weeks and when it became difficult for me to get out with J-Jay, someone would come and sit with him so I could do something with Jenna-Mae.

“It made a massive difference and I wouldn’t have coped otherwise. It was such a hard time and just me and my two children, 24-7. Without that support, advice and back-up, I wouldn’t have got through it.

“There’s no doubt in my mind about that and if you’d told me three or four years ago that I’d find myself flushing a catheter or dressing a Hickman line, I wouldn’t have believed you. I wouldn’t have had a clue.

“However, I learnt so much in a short space of time and that was only possible thanks to EACH.”

J-Jay had often complained of pain in his leg but it was put down to growing pains. That discomfort became sharper in his left leg but it was hard to get a doctor’s appointment, because of the pandemic.

Instead, Marie, 39, was only able to get advice over the phone and she was told to administer Ibuprofen and Calpol. Neither made any difference. Marie also noticed her son was not eating properly, losing weight and starting to limp on his left leg.

Things then reached a head in June 2021. J-Jay had a particularly bad night and was screaming in pain. Marie took him to hospital and the first consultant she saw picked up on the fact his left leg was skinnier than the right.

X-rays revealed a tumour measuring 11cm by 8cm. It was in his pelvis and pushing on his sciatic nerve – hence the extreme pain.

“It didn’t seem real and is the news every parent dreads,” said Marie, who then had to take her son to Addenbrooke’s Hospital, in Cambridge.

“It’s the worst-case scenario and I didn’t know what to think. Apparently it was a very rare type of cancer, more commonly seen in adult women – not ten-year-old boys.

“J-Jay had scans and biopsies before the first chemotherapy and he ended up having nine or ten rounds, going through to January 2022. J-Jay absolutely amazed me because he was so brave.

“He’d always loved his hair and didn’t want to get it cut, so it was quite long and fluffy. After the chemotherapy started it began coming out in clumps and that really upset me, because I knew how he’d be feeling.

“I was devastated but he took it in his stride and said ‘why are you so upset, mummy?’ My poor little boy was going through hell but he always had a smile on his face. He was so brave.

“At one point I was told he only had two or three months to live but he managed to fight on for another nine.”

J-Jay died on 24th November 2022. In the months since, Marie has started receiving bereavement counselling while Jenna-Mae and half-brother Leon have attended sibling days organised by EACH.

“I can’t thank everyone enough and by that I don’t just mean the incredible nurses, who also came to the funeral and couldn’t have done more for us,” said Marie.

“I mean all the staff, fundraisers and brilliant volunteers. I never thought I’d find myself in the situation I did but I’m so thankful they were there.

“It was invaluable and I don’t know where I’d have been without them.”

Published in May 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

My poor little boy was going through hell but he always had a smile on his face. He was so brave.

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