Eva’s Story

Eva was just 13 when she was diagnosed in early 2022. We have just had the 4th anniversary of diagnosis. It has been a big 4 years. Eva's diagnosis is an ultra rare one: SEF (Sclerosing Epithelioid Fibrosarcoma). Sarcoma is a rare cancer and SEF is a very rare subtype of a subtype. What this means is that very little is known about her cancer and how to treat it. She had massive surgery in summer of that year, in which they removed a small melon-sized tumour from her chest cavity. It lasted many hours
and they were able to remove it entirely with good margins. This was followed up by a 6 week course of radiotherapy in the Autumn.

Unfortunately, the cancer had already spread into her bones and lungs. The following year, after much negotiation and hard work on the part of her team, she was enrolled on a course of immunotherapy on compassionate grounds. Initially, it seemed like it was going to help but the metastatic cancer in her bones resisted the treatment, so it was stopped.

We also tried another drug called Pazopanib, to try to hold the growth of the lesions. It too failed. After a period of a couple of years, her team managed to access a different immunotherapy treatment for her, which we will be starting in the next few weeks. All the scans and tests have been done, and her portacath has been fitted. We hope it will help.

The last few years have been unimaginably hard, as the mets have grown in size, in some cases fracturing her bones, and causing her chronic pain. She takes high doses of methadone and oxycodone to manage the pain, which cause their own side effects. Through all of this, Eva has shown enormous strength of character, resilience, patience and courage. She has endured countless procedures, scans, cannulas and the constant fear of not knowing the future. She paints and goes to school as much as she can and fights to live a life as normal as we can make it.

We really need this break in the Cotswolds and thank everyone from BSF especially Ben for making this possible.