Sophia Barwick

Sophia was diagnosed with embryonal, fusion negative rhabdomyosarcoma in December 2022. Her care is led by Sheffield Children’s Hospital and her disease is currently stable following frontline treatment.

Make A Donation

Sophia's Story...

Sophia became ill a few weeks before her diagnosis. She couldn’t tolerate food or fluid and couldn’t go to the toilet. Sophia was also constantly spiking temperatures. She was admitted to Sheffield Childrens Hospital on the 8th December 2022 and didn’t come home until the 1st February 2023 due to complications with treatment.

Sophia was diagnosed on the 27th December 2022 with Hyderdronesis of the kidneys and had emergency surgery to save them, unfortunately, as a result, Sophia’s right kidney is now permanently damaged with no function.

Following her diagnosis, Sophia received 9 rounds of intensive chemotherapy and 6 weeks of proton beam therapy at the Christie in Manchester. Sophia’s end of treatment scans in July 2023 didn’t confirm that the disease was stable. A decision was taken to monitor Sophia’s symptoms and wait a few months to rescan and set her treatment path.

Sophia’s October scans showed no change and confirmed her tumour as stable. Sophia now isn’t eligible for maintenance chemotherapy and still cannot be operated on due to the high risk to her right leg. This means Sophia is unfortunately at higher risk of relapse and recurrence due to her tumour being inoperable and the initial size on diagnosis.

Sophia’s scans in January 2024 have confirmed stable disease.

What was your journey with cancer like?

Sophia’s journey at the start of treatment was very tough and we had complications before starting chemotherapy as Sophia’s kidneys had hyperhidrosis due to the rapid growth of her tumour. The whole journey feels like a whirlwind. From start to finish, treatment was intense especially when Sophia was receiving daily proton beam therapy alongside chemotherapy in Manchester away from home. Our treatment journey wasn’t without bumps in the road and just when we thought intensive had finished and maintenance could begin giving us some freedom back as a family, there was uncertainty about whether Sophia still had active disease. We we had to wait a long and gruelling three months to find out if Sophia was stable.

What changes would you like to see for children diagnosed in the future?

Sophia’s tumour still remains inoperable putting her at significantly higher risk of progression or relapse. There isn’t much to indicate the chances of maintaining a stable tumour and for how long this will be. I’d like to see a change in surgical advances making surgery a potential option for more children to help lower the risk of progressive disease.

I’d also like to see more research into the maintenance chemotherapy regime and potentially immunotherapy treatments specifically for RMS, our children deserve a better chance of survival.

Sophia Barwick

Sophia's Story...

What was your journey with cancer like?

What changes would you like to see for children diagnosed in the future?

News