Elin Rose Waite (9) was diagnosed with Ewing’s Sarcoma in 2011 and has since endured numerous chemotherapy combinations and surgery to remove part of a bone in her leg.
Elin’s teacher parents moved to Jersey in 2005, with Sian Waite working at Les Quennevais School and her husband, Martin, working at Le Rocquier School.
Elin and her younger sister Nia (5) were both born in the Island and the family returned to the UK in 2010 to be closer to relatives. Elin was diagnosed with Ewing’s Sarcoma the following year.
Although they had left, the Waite family kept their ties to the Island, and the JEP’s Elin Rose Waite campaign in 2013 saw generous readers raise around £30,000 towards her treatment.
Last year, having exhausted all options and being told that available treatment through the NHS had come to an end, the family travelled to the US for further treatment which was then continued in the UK.
However, a CT scan of Elin’s lungs recently has showed two new lesions, and she was unable to receive the high dose treatment due to the risks involved.
This week, the family received a welcome boost when Elin’s eligibility for a chemotherapy drug called Abraxane was confirmed, and she is receiving this treatment at the Royal Marsden Hospital in London.
Mrs Waite said her daughter had to meet a long list of criteria before being selected to receive the drug.
She said: ‘She has previously responded very well to a similar drug, and Abraxane is a newer formulation which has a different mechanism of action. The hope is for greater effectiveness with fewer side effects.
‘It is a positive step to access this treatment but Elin’s position continues to be very difficult. We are ever hopeful for improvements.’
She said that, day to day, the family try to keep their lives as structured and normal as possible, with Elin going to school when she is not in hospital and attending the hospital school when she is an inpatient.
‘She never wants to be treated differently and is incredibly determined, but there is a huge amount to cope with emotionally and physically,’ said Mrs Waite.
‘We are so grateful to all those in Jersey who showed their immediate support when the appeal was launched and created such an overwhelming momentum that continues today, enabling treatment and future research into Ewing’s.’
A recently released book of humorous poems by Jersey librarian and author Dina Andrews, entitled Don’t Pick Your Nose, Elin Rose, was named after the little girl. The author is a friend of the Waite family and used to babysit for Elin.
Ongoing updates on Elin’s progress can be found here.
