Sunday June 8, 2014

WE C Hope co-founder, Abby White, writes about the emotional challenges of bringing effective care to children with retinoblastoma, survivors and families around the world. 

Since co-founding World Eye Cancer Hope (formerly Daisy’s Eye Cancer Fund), my days are always busy with running the charity, program development and delivery, and fundraising.  In addition, I receive requests for support from families around the world.  As we become more well known and rank higher in search engine results, so the number of families contacting us increases.

Many families contact us from developing countries, hoping to access care overseas as an alternative to eye removal surgery recommended by local doctors.  Others seek help to access treatment locally they cannot afford.  Most are desperately seeking a miracle for their child’s incurable cancer.

World Eye Cancer Hope cannot provide funding for individual children.  Demand is too high and funds too low.  How could we possibly say “we will help this child but not that one”?  We would also never have funds to address the challenges that cause children to be in such desperate need.  We must invest our small resources wisely in programs that can help many children.

My heart breaks every time I have to tell a family we cannot help financially.  Of course there are other ways of helping, particularly connecting with local resources, sharing information about the cancer and supporting the family’s decision making. simply showing I care enough to dedicate time and energy to finding solutions.  But few children in these circumstances survive.

The past month was one of the hardest I have ever experienced.  Eight children died in just two weeks, eight little lives so treasured, whose parents arms now ache with emptiness. Eight innocent smiling faces mutilated by the cancer they had no hope of fighting.

Children like Salma in Nigeria, whose mother first saw a white glow in her eye before she was a year old.  As she wasn’t sick, her mother dismissed as nothing of consequence the occasional glint no one else could see.  The glow gradually became more visible though, and when Salma’s father saw it, the family considered going to a specialist.  Borno State has experienced random attacks by the Islamist terror group Boko Haram, often targeting public buses.  When Salma’s eye began to swell, the family decided to make the journey despite fear for their safety.  Salma was diagnosed with unilateral retinoblastoma and doctors advised that her eye be removed.  Shocked and without emotional support, her father ran from the hospital, believing there must be an alternative.  By the time he connected to the internet via a friend’s cell phone late last year, the cancer had grotesquely savaged Salma’s face and neck.  She died two days before her fourth birthday.

Though the backdrop of Islamist insurgency is an extreme situation, Salma’s story reflects the experience of six children who died in one short fortnight.  Their parents saw the white glow for months but did not know its significance.  Care seeking was delayed because the child had no pain or apparent loss of sight.  When other symptoms manifested, specialist consultation and treatment was delayed or refused due to lack of funds for safe travel or medical bills, poor physician knowledge and lack of emotional and practical family support.

Joel’s story is different.  His parents led a relatively comfortable life in Bangladesh with a small retail business and children in private school.  They researched alternatives to eye removal surgery recommended in Chittagong, and were financially able to seek expert care in another country.  Their son underwent a year of therapies to save his cancer filled eye, while the other remained cancer free.  The cost of treatment and living became a heavy burden and they sold their business to raise funds.  When they returned home, they could not afford the cost of travel and medical bills for ongoing follow up care.  A year later, Joel began to complain of fatigue, pain and difficulty breathing.  His cancer had relapsed, and doctors told his parents treatment could no longer save his life.  They found our website at this time, hoping we may know of a miracle cure.  Now Joel’s siblings attend a poorly resourced government school, and their parents must rebuild their livelihood from scratch, while mourning their son who could have been saved.

Founding World Eye Cancer Hope is one of the most rewarding things I have ever done.  85% of children with any type of cancer live in developing countries, but they receive less than 5% of global childhood cancer funds.  Retinoblastoma is curable, yet 8 in 10 children die.  We can change the landscape of retinoblastoma care, bring existing life saving resources to children and families.  Why would I not choose to help make this a reality for children like Salma and Joel?

Our program in Kenya is raising awareness, strengthening medical care and building vital family support.  Our Kenyan partners are now helping teams in neighbouring countries who wish to enhance retinoblastoma care.  In the USA we are growing a strong core team to address the needs of children and families across the country.

Yet, so many days I feel I am banging my head against a wall, watching children die who could have been saved with clear information, simple surgery and emotional support.  Seeing families pushed deeper into poverty after pursuing treatments that gave eye-saving hope but caused the child to suffer more.

This is lonely, exhausting work, especially when appeals to individuals, trusts and  companies for support are ignored or turned down.  I am so connected to the cause, to the families, it’s hard to not feel a personal rejection.  Sometimes I feel I’m drowning in grief, stretched to the limit of my resources.

In the past few years, balancing increasing commitments and demands on my time, physical and emotional resources has become more challenging.  Late effects of radiotherapy in infancy are now destroying the precious remaining sight in my one seeing eye.  Radiotherapy also caused cluster headaches to develop 14 years ago – intensely painful night-time headaches that ravage sleep, are rarely controlled and leave me constantly sapped of energy.

As I juggle multiple roles with limited resources, deciding what to prioritise can be hard.  A few years ago, I delayed replying to a new email enquiry.  I planned to respond the next day after helping a family seek an emergent second opinion, and attending a personal engagement that evening.  In the interim, the family arranged eye saving therapy abroad – the window of opportunity to counsel them on locally recommended eye removal surgery was missed.  Ultimately the child’s unilateral cancer relapsed and he died, just like Joel.

A timely response may or may not have made a difference.  I will never know, but the child’s outcome stays with me, and influences my choices when faced with an enquiry coming in at the end of the day or over the weekend.  When does one say “this is my boundary, I am not responsible for every child in the world”, when you know there is no other support for the family?  If I were that parent, I would pray with all my heart for someone to be there for me.

When a family in a developing country has no medical information to share, I request the child’s current photo which can give information the family is unable to share.  The world’s best medical care cannot cure cancer that has ruptured the eye and taken over the child’s face.  Too often I have to tell parents cure is not possible for their child, knowing my words will destroy the last shreds of their hope.

Over time, my emotional response to these graphic photographs has decreased.  Perhaps my ever-reducing sight lessens the reaction. Perhaps I have become immune to the horror of the child’s suffering.

I worry that constant exposure to this great suffering will inoculate me from empathy and compassion, when responding to it becomes routine.  I worry that my response to a family in a developed country struggling with the reality of their child’s treatment will be coloured by thoughts of a family in Africa suffering the intolerable trauma of their child’s dying without pain medication or local support.  Pain is subjective – the mother mourning the loss of her child’s eye in Texas needs the same compassion and respect as the mother watching her mutilated child die in Togo.

Every day I am newly inspired by the children, survivors and their families fighting eye cancer.  Parents in the American midwest grappling with the decision to try one more round of chemo or remove their child’s second eye, the Texan family fighting the odds for their child’s life, the family in England requesting doctors stop chemo and remove their child’s unilaterally affected eye, the family in north-western Kenya who overcome retinoblastoma after two eye removal surgeries and months of chemo, only to lose their child this week to bone cancer, the mother in Sudan who walked with her child on her back for a week to seek medical care, the family in Bangladesh who lost everything pursuing treatment they were told would be their miracle, the family in Afghanistan who took on dangerous road trips through border country to stay connected with their relatives between treatments in Pakistan, the children in Kenya who are now growing up cancer free and going to school because of our work, my fellow survivor in New England who takes on multiple challenges with such eloquence and grace, the two little girls who in 2004 demanded that I come to the edge, then pushed me forward to show me I could fly.

Caring for families in acute distress constantly depletes my physical, emotional and spiritual resources, but the knowledge of how life could be made better for each child, family and survivor is a strong motivational pull.  Supporting families, fundraising and addressing the issues that cause children to die.  The suffering that can be mitigated with relatively small resources.  Somehow when I think I have no more energy, I mine a new seam from within, and from the encouragement and kindness of others.

The children, families, survivors, our supporters, all pull me forward in pursuing our vision of life and sight for every child.  I am strengthened when I feel our global Rb community is with me in the mission.

In late September, I will trek for one week across Tanzania’s Great Rift Valley to raise funds that will help build expert care and family support in a region where 9 in 10 children with curable eye cancer die.  I will hike across game-filled savannah, remote lava plains and dusty semi-desert to the sacred mountain Ol doinyo Lengai, camping under the stars each night in the protection of Maasai warriors. This will not be an easy challenge for me, especially without the eyes of my guide dog (she cannot come on this trek).  I take on this adventure because families have no choice but to walk through the dark valley when their child has cancer.

With every step I take through the “Cradle of Mankind”, I aim to expand local capacity to save more children and give their families the same hope we have in the developed world.  Despite all the challenges – my own and within the global retinoblastoma community, we progress one step at a time with patience, care, love and respect, to reach the ultimate goal of life and sight for every child.