Up Front Down Under
Thursday December 8, 2011
Rachael Olley, Operations Manager at the UK Childhood Cancer Parents Alliance, and mother to a survivor of childhood leukaemia, reflects on her visit to a hospitalized child with retinoblastoma in Fiji.
Opening My Eyes On the Other Side of Paradise
Abby White and I attended the World Congress of Paediatric Oncology In Auckland, New Zealand, at the end of October 2011, on behalf of the UK Childhood Cancer Parents Alliance. Abby invited me to visit Fiji after the conference, to see for myself the challenges of childhood cancer care in a developing country.
I feel very fortunate to have had this opportunity. The visit opened my eyes to an entirely different world, and although paediatric oncology treatment is not perfect here in the UK, I feel very blessed that my son was fortunate enough to be diagnosed and treated here, compared to 80% of children in the world with cancer.
I thought I had a fair understanding of the difficulties faced by families whose children are diagnosed (IF they are diagnosed) in a developing country, through my work with ICCCPO and attending their international conferences. Spending time with the families in Fiji really brought home to me the harsh realities of this situation.
We were invited to stay with a Fijian family Abby has been helping for three years. Their daughter, Sera, had treatment in Australia for bilateral retinoblastoma, including a Bone Marrow Transplant and treatment to save her remaining eye.
Sera is a miracle child. She survived the spread of cancer to her bone marrow, and being sent home after treatment with absolutely no follow-up plan. When her family contacted Abby, she had received no follow-up for over 2 years. Fortunately, Abby arranged follow-up care and Sera is doing very well today, a very happy, healthy eight-year-old.
Follow up is difficult though. The city is a hot 5 hour bus ride from Sera’s home, and the cost of a hotel overnight is a huge financial burden. The only alternative is a round trip of 10 hours in one day.
In the UK, treatment centres are dotted around the country, and although families may have to travel long distances to specialist care, we have better transport systems, family housing near the hospital and financial assistance.
Sera’s family were only able to fund her treatment because her dad traded in his superannuation. He is an engineer with a relatively good income and job security, compared to most Fijians, but he may now have to work for the rest of his life as he has no pension funds. Imagine having to fund your child’s treatment, knowing your retirement will be impossible if you want to avoid even greater poverty.
We visited another family in the hospital whose son has retinoblastoma. Iyowane is the first child to be diagnosed with cancer in both eyes in Fiji since Sera’s diagnosis on Christmas Eve 2005. He desperately needed treatment abroad to save his only seeing eye. After Sera’s experience, Abby was keen for organised treatment and a long term follow up plan to develop quickly.
The hospital was an old, shabby building with none of the modern facilities we’re accustomed to. My first impression was the smell. It was very hot, almost 30°C. Judging by the smell from the open drains, it wasn’t just water being carried away. This in itself was shocking – this was a hospital for goodness sake.
The friendly, helpful nurses were keen to work with Abby to help 16 month old Iyowane. His doctor explained how the family left hospital after his diagnosis and failed to return. They live on a remote island (there are over 300 islands in Fiji). Once home, relatives and the wider community persuaded them that radical treatment was unnecessary.
Had a legal injunction not compelled the family to return, Iyowane would simply have died. This is almost inconceivable to me as a Mum – why would you not take your child for potentially life-saving treatment? But the answers are obvious when you explore the issues faced by this young couple.
Why Refuse Treatment?
Iyowane’s family live on an island 27 hours by ferry and five hours by bus ride from Suva. They have no money to travel. As a result, Cecelia is isolated from her husband, friends and family while her son receives treatment. When we met, she had not spoken to her husband in 5 months as she could not afford a mobile phone.
The family also face enormous pressure from their family and community who believe prayers alone will cure, and removal of an eye is unnecessarily barbaric. This is very common in close knit communities where access to cancer information is poor.
When you consider all these factors together, it is no wonder that abandonment of treatment is so common – it is the primary cause of treatment failure among curable children in developing countries.
The Treatment Journey
Iyowane and his Mum did have their own nicely decorated hospital room, but the en suite bathroom was shocking. The shower is not up to the standard we would expect in a hospital. The toilet was missing its cistern cover and seat cover. How often are we lectured on the importance of cleanliness when our child is receiving chemotherapy? Yet a family is forced to live in relative squalor as they attempt to resist infection in their immune-suppressed child!
Iyowane’s future is now full of potential, with the right support. Abby bought a low cost phone for Cecelia, enabling her to talk with her husband for the first time in five months, and plans are underway to send this precious little boy to New Zealand for specialist care.
This visit truly opened by eyes. Although emotionally it was quite difficult to face the harsh reality of childhood cancer in a developing country, it gave me a deeper understanding and made me appreciate how lucky my family is that our son had access to life-saving treatment here in the UK.
Abby White, Iyowane (16 months), Cecelia (Iyowane’s mother), Melaia (Sera’s mother), Sera (8) and her sister, Siteri (3).