Not growing pains
Fewer than 30 children in the UK develop Ewing's Sarcoma each year. It usually occurs in the teenage years, is more common in boys and is often misdiagnosed. Elin complained of a 'spiky' pain in her right leg. A doctor initially dismissed it, putting it down to growing pains or a pulled muscle. However, when the pain continued to bother her, we got an appointment with a different doctor. Elin and her dad went out for the appointment and I stayed at home with her little sister, expecting them home within the hour - not realising an emergency xray had just been requested.
On the 13th April 2011, I took Elin to the hospital for an xray, 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, 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 subsequent scan showed a pressing need to move quickly to radiotherapy.
Elin had whole lung radiotherapy in May 2013, and we decided at that point to launch the Elin Rose Appeal. We were told that options in the UK had been exhausted, and we desperately needed to create a way forward for our little girl.
The response to the appeal has moved us beyond words - and as a result of the appeal and the help of so many incredible fundraisers, we were then able to access further specialised radiotherapy treatments in America, in July 2014.
Elin's clinical responses to the different treatments have at times been remarkable, but sadly we have never reached the point of remission. She has responded well to the majority of the treatments she has received, but bone marrow fatigue or chemo resistance develops before clear scans are reached. The radiotherapy treatments were extremely effective and they have brought us close to where we would hope to be, but further treatment is needed, as new lesions have recently appeared.
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We continue to research the best way forward for Elin, and the appeal allows us to consider all that may help her, wherever that may be. The huge difficulty is that, through an accident of nature and a translocation of two chromosomes, Elin developed what is a very rare disease. We have searched for papers containing published results on promising treatments, but the research lacks the funding it so desperately needs.
We are determined to do the best we can for our little girl, and also for this desperate situation where children and families facing rare childhood cancers are caught in a wilderness of underfunding. Ewing's Sarcoma is a disease that is both chemo- and radio-sensitive, and funded research is the only way we are going to find the treatment that will allow children like Elin to have that most elusive thing, a normal life. Every day, Elin asks us when treatment is going to stop and when she can just be normal. We desperately need the treatment that will allow this for her and for children like her.
This appeal is to enable us to access treatments for Elin, and anything not used for this purpose will go to the Ewing's Sarcoma Research Trust and research into treatments for Ewing's Sarcoma. We can't sit back and allow children simply to reach the end of a list of approved treatments, and offer nothing else simply through a lack of research. Funds, pressure and awareness will lead to research and this will lead to new ways to help, extend and save lives.
Elin a few days before she was diagnosed
Elin bumped her front teeth when swimming shortly before chemo started. They were slightly wobbly so the doctors decided to remove them to minimise infection risk. No front teeth for two years - but this summer they have just started coming through.
Most of Elin's chemo was given through the picc line in her arm. Elin became an expert at helping the nurses with the dressing changes.
Elin had most treatment on T11N at UCH, where the play specialists and nurses made it as child-friendly as possible. Elin is a big fan of the play lady, Emma!
Elin at Stanmore, the day after her operation.
Recuperating at home
Early December 2012 and Summer 2013
We are so grateful for any support you are able to give to the Elin Rose Appeal. Any money raised will go towards costs related to Elin's treatment. After treatment, the remaining money will be donated directly to the Ewing's Sarcoma Research Trust.
This fantastic charity was set up by Matt Short who was diagnosed with Ewing's in November 2007 when he was 16. During his second course of treatment in 2010/11 he decided he needed to do something positive to tackle this disease, which is why this charity was formed. The mission statement of the trust reflects the urgent need for research and raised awareness:
"We aim to fund desperately needed research into the treatment of Ewing's Sarcoma, offering the promise of a cure for this aggressive, but treatable form of cancer.
In doing this, we hope that less invasive treatments can be developed that will not compromise the same excellent survival rates that are being achieved, by working to support the best specialists in the world.
Ewing's Sarcoma prognosis is often related to detection and early diagnosis. We want to increase public awareness of this often undetected cancer, and to provide links and support for those affected to ensure no-one's physical, social, emotional or psychological needs are ignored."
If you could like to find out more about the Ewing's Sarcoma Research Trust or donate to the appeal, please follow the links below.