Elin’s Story
Elin was diagnosed with Ewing’s Sarcoma in her fibula in April 2011. ESRT has been supporting the family in fundraising for potentially-needed treatment in the USA. This was written by her father, Martin.
On the 13th April 2011, I took Elin to the hospital for an x-ray, assuming it would reveal a small fracture or a sprain. But a doctor introduced himself and, having asked if I was Elin’s father, requested that I speak with him in a private room.
I fought to keep control of my emotions whilst I listened to the doctor as my little girl played on my knee. She had, he explained, a tumour on her leg that looked very bad. He hoped he was wrong but he didn’t think so. He would send the scans to the Royal Orthopaedic Hospital in Stanmore for confirmation. They would be in contact soon.
Driving home, my mind was spinning. In the back seat playing with Barbies, singing to herself, asking questions, Elin lived in ignorant bliss. In the front seat, I gripped the wheel and rehearsed what I would tell my wife, her parents, my parents, school and other friends.
The Royal Orthopaedic Hospital contacted us, and within a day or so the next year was mapped out. Chemotherapy, surgery, more chemotherapy. The tumour now had a name - sarcoma; later tests would confirm Ewing’s Sarcoma. Very treatable if Elin had no signs of the disease elsewhere.
Further tests were inconclusive. There may be spread in the lungs but they couldn’t be sure.
Treatment began: six rounds of aggressive chemotherapy on a three week cycle. When Elin wasn’t in University College Hospital, London, she was recovering at home or at Eastbourne District General being treated for infections brought on by low immunity. Though she coped with the sickness, hair loss and isolation remarkably well, as a parent it was heartbreaking to watch.
In the autumn of 2011, Elin underwent surgery at Stanmore to remove the affected part of the bone from her leg. As it was her fibula, she did not need a replacement bone - the working parts of the bone at the top and bottom had not been affected by the tumour and could remain, simply with a gap in the middle. It went smoothly and she spent just two days in hospital.
After this, there now followed further chemotherapy. Eight cycles of a slightly less aggressive concoction that would help ensure she was safe from the cancer’s return. That is the theory at any rate. But the first scans after the treatment showed there was tumour growth on her lungs. The second phase had not been aggressive enough it seemed.
Poor Elin, who thought that her treatment had finished, her hair would grow back, her life would be normal again, had to face more treatment.
The first drug combination used to clear her lungs of tumours failed. The second offered little hope but, to our amazement and joy, it started to work. The tumours actually began to shrink again. Alas, they are stubborn creatures, and they shrank too slowly and in the end they stopped shrinking at all.
By now it was Christmas 2012, well over eighteen months of continual treatment for a little girl who had barely turned five and would soon turn seven. The consultant called a halt to treatment and suggested that we wait and see if the tumours would grow again, if they would remain dormant, or if it was just scar tissue that remained.
The scan in February 2013 confirmed all our worst fears. The tumours were growing again and now at an alarming rate. There was one more drug to try. We hoped that this final chemotherapy protocol would do more to halt things, but the follow-up scan showed we needed to move quickly to radiotherapy.
Elin completed her radiotherapy at UCH in May 2013. This is the last treatment available to Elin on the NHS; after much research, we have discovered potential treatments for Elin, including one in the United States. Leading researchers in this field have named this as one of two treatments that hold the most promise - and this is the only one currently accessible.
With the kind help of the Ewing’s Sarcoma Research Trust, we have launched an appeal for costs related to accessing treatments for Elin, now that all other options have been exhausted. After treatment, all the remaining money we have raised will go directly to the Ewing’s Sarcoma Research Trust. They are playing such a vital role in an under-funded field: funding research, promoting awareness, and providing support for families in this awful position. Our appeal, with their support, is giving us real hope for lovely Elin.