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Different Perspectives – Meet Our Founder
Wednesday July 13, 2017
Abby White, WE C Hope co-founder and volunteer CEO, shares her experience of living with the consequences of bilateral retinoblastoma, and her very personal journey to the organization’s birth.
Unusual Birthday Gifts
I was born with cancer in both eyes, inherited from my father, and congenital cataracts, inherited from my mother. Unusual birth presents indeed. I was blessed to be born in the UK, with good access to high quality care. Both my eyes were saved, with good sight in my left eye. My sight was hard won though, requiring radiotherapy in infancy, and multiple rounds of laser and cryotherapy. By the time I began school, the years of treatment and frequent eye exams were behind me, and I thought nothing of being a “cancer survivor”.
As a child, I wanted to be a nurse “when I grow up”, but when I encountered science in school, I realised this would not be a good path for me. Though my sight was pretty good, many practical tasks were challenging to complete independently, and the subjects became increasingly difficult to engage with.
I studied geography at university, followed by a gap year that included working for a small Kenyan charity called Future In Our Hands. During my time in Kenya, the country of my father’s birth, I began to develop plans for a teaching career in Africa. My father died just before the start of my final undergraduate year and I felt close to him in Kenya. I was keen to spend more time there.
My sister and me (green dress) at a time when my eyes looked OK in photos.
I returned to postgraduate studies at Oxford University. Just as the puzzle pieces of life seemed to be fitting into place, late effects of radiotherapy 20+ years before began to manifest. From the removal of my right eye in 2002 to nightly cluster headaches that have destroyed my sleep for the past 17 years. I have truly learned the meaning of the phrase “childhood cancer is the gift that keeps on giving”. Not forgetting the second cancer implications.
In 2000, while dealing with these emerging medical issues, I began teaching myself to build very basic websites. Not at all skilled, just something to keep me busy and away from mourning the loss of my plans.
By 2003, I felt life was finally regaining some equilibrium. I spent 2 months that summer travelling Greyhound bus through the South and Eastern USA, visiting friends and various childhood cancer support programs.
I returned to the UK in late summer, ready to begin planning the next phase of my life, but not yet having clarity about what that would be. In September 2003, I experienced a violent event that radically impacted my life. Like my father’s passing six years before, it was one of those pivotal moments in time by which one measures other events as “before” and “after”.
Trying desperately to hold myself together in the following weeks, I created a website called Orphans of the Cancer Storm (now defunct) for families of children with Retinoblastoma and optic nerve glioma. The website provided family stories, a small directory of web links with one-paragraph reviews for each site, tips from parents for living life well, and a contact form. I had no idea where this site would lead. It was simply my survival tool.
One of two field trips I co-led to Kakamega Rainforest in August 1998 and August 1999, teaching students from Kisumu Girls High School in western Kenya.
I have trekked across Tanzania’s Great Rift Valley twice, in 2005 to raise funds for Rati’s medical care, and in 2014 to remember her life, 10 years on.
Led by the Children
On September 29, 2004, I received an email from the family of a little girl in Botswana. 19 months after her eye was removed, two year old Gorata (Rati) Poonyane was fighting for her life.
“Please send prayers for our little girl Gorata”.
I tried to imagine how I would feel, knowing that without treatment, my precious child would be condemned to a slow, agonizing death. What would I hope for if my only option was to ask strangers for advice and prayer?
I was infinitely blessed to have free access to expert care, and I could not find peace, knowing Rati’s plight. So I began sending my own emails and cold calling hospitals around the world searching for help. Daisy Lloyd (then five) had recently returned from treatment in Canada in attempts to save her last eye. Her family offered a significant gift from The Daisy Fund to help Rati, and three weeks after I received the first email from Botswana, I walked into Toronto’s Hospital for Sick Children with Rati and her mother.
Rati responded very well to chemotherapy, and for more than a year, tests showed no evidence of cancer. Sadly, late diagnosis, lack of expertise and family support sealed her fate before her first birthday, and she died in August 2006, aged four. I was devastated by her passing.
Opportunities were missed to save Rati’s life in Africa with locally available resources. When she died, her doctor, Brenda Gallie, and I began tackling the challenges that cause so much suffering for families. Our response evolved into the organization we are today, World Eye Cancer Hope.
When I responded to those first emails from Rati’s mother, I never expected my life would be taken in such a direction. I was a crushed young lady struggling to find ways to hold on to life. Looking back, I have deep gratitude for the path Rati and her family’s love created for me and for the world. The process has often been very challenging with my limited sight, confidence and self-esteem. But I am glad the children, families, survivors and professionals of the retinoblastoma community push me out of my comfort zone every day. I am glad I have this opportunity to make a meaningful and personal contribution to lives now and to the future.
Rati’s family, during treatment in Canada. I worked with South African Airways for five months, determined to reunite the family in time for Rati’s stem cell transplant. I am so thankful they were together to share love and create precious memories in the last months of her life.
Prof. Brenda Gallie, Morgan Livingstone CCLS and I debrief during our visit to Kenya in November 2007. We held a pilot child life program and met with retinoblastoma treating medical teams across the country to gauge interest in developing Rb care.
Magnified and Invisible Adventures
I began to lose my peripheral vision in 2000 but, with glasses, I could read newspaper print until 2004. Since then my sight has gradually deteriorated in my remaining eye, primarily due to corneal vascularisation – blood vessels growing into the clear front layer of my eye.
I am incredibly blessed to have a ClearView+PC video magnifier. This enlarges text and images placed on a movable bed under the camera. So I can do tasks like study maps and complete forms. People often ask, incredulous “but you have perfect handwriting – I thought you couldn’t see” – they don’t know it took me an hour to complete the 2 page form they are holding.
I connect my laptop to the ClearView’s 19 inch movable screen, enabling me to sit with my back and neck straight while working. This is vital as I need my eye close to the screen to see clearly. Working with a laptop alone is physically very painful and unhealthy, and I’ve learned from experience that no work is so urgent as to justify that harm.
My ClearView (£2,500+ brand new) was a gift from a friend. Her employer was updating her equipment, and she very kindly donated her old ClearView to me. I received this news on Christmas Eve, years ago. One of my most treasured Christmas gifts ever.
When working away from home, I use the ClearView’s detachable screen with an ergonomic arm. While I don’t have the benefit of portable magnification, this setup protects my back and my neck, for which I am deeply thankful. The ergo arm was also a gift from a dear friend, and I feel I carry a piece of her heart with me when I travel. The entire kit weighs about 18kg when packed in a suitcase, and takes 5-10 minutes to set up. Thanks to a medical letter, I have never been charged by an airline for this additional checked bag.
The screen died recently from old age. For almost a week I was unable to work while I sourced and awaited the replacement. The experience caused me to think of the day when my other technology reaches the end of its life. My laptop is 7 years old, and my ClearView much older. I worry too about what will happen if my sight reaches the point when I cannot work with my current equipment. Or if software updates will mean steps backwards for me in terms of access.
As a volunteer, I do not have access to the support that most paid employees and students with disabilities have. Years ago, I applied for funds for specialist kit – the experience was utterly demoralising. My confidence is fragile at the best of times. Refusal at every turn is like being told “what you do is not good / valuable / important / well paid enough to fund your equipment needs”, so I stopped asking. My energy is better spent on things that will build me up and where I know I can make a difference.
ClearView+PC magnifying a map of Oxford.
Computer setup when away from the office.
I use high contrast on my laptop. These accessibility settings are necessary as my eye is now very sensitive to light due to late effects of radiotherapy. However a lot of websites are not designed with high contrast uses in mind. For example, icons, pictures, transparent black text images and links become invisible to me. Navigating websites and software that is not high contrast compatible demands significant time and patience, is frustrating and drains emotional energy.
I report issues to companies whose services I use often. Some respond positively, but I rarely see practical change on website design. I have more than once encountered versions of the response “can’t someone else do the job instead?”, as if designing for disabled users is an utter inconvenience.
My days often run late into the night. But I like to go to bed with satisfaction of knowing I have completed what I set out to do that day. When I keep regular work hours, I fall gradually further and further behind.
As I work each day to improve care for children with retinoblastoma, families and survivors such as myself, I become ever more aware that the cancer itself, nor my limited sight are responsible for holding me back. One major challenge is the world not being built to accommodate my needs. That is not the fault of the cancer I was born with or the effects of its treatment, it is a result of barriers created by the people responsible for designing the world in which I live. Every child who overcomes retinoblastoma has the potential to achieve great things, and the people who surround us have the potential to design a world in which we can thrive, achieve our goals and push the boundaries of the possible.
I invested a lot of time setting up a profile and creative pinboards for WE C Hope. Not long afterwards, Pinterest updated its system – now this is what I see. Board cover images and image collections on individual boards are invisible to me. I can no longer work with this system. I can still see to use it, but the designers have blinded me. Only individual images, once clicked, become visible – but why would one invest time clicking blank space to reveal unknown images?
Hootsuite icons are invisible in High Contrast, including distinguishing platform icons. Since LinkedIn’s recent update, posted images and link graphics are now invisible. This HP printer is very efficient, but setting it up and using it is a test of the greatest patience! The text is there – high contrast white, while the wizard resolutely refuses to allow colour contrast on its background – rendering it unreadable. Controls on the printer are all touch-screen. I’ve learned to memorize all the settings!
Retinoblastoma For Life
Focusing on retinoblastoma every day, while living my own cancer experience, is often emotionally gruelling. The form of cancer I had is caused by mutation of the Rb1 gene. This means I have a 50/50 risk of passing the mutation (and cancer) to my children. Several months ago, I was discussing the implications of this with my mother. She told me that, had genetic testing been available when she was pregnant with me, she would have terminated. I want to believe that she really meant she would have spared me the experience of retinoblastoma, had she a choice. I want to believe the giant burning holes in my heart created by those words will mend.
The experience has made me acutely aware that parents of adult survivors carry a great deal of hidden emotional trauma, even when their child has a “good” outcome. I have been shocked to learn that I am far from alone in having the above conversation with my mother. My heart aches to know that other adults faced this while discussing the deeply personal subject of starting a family. For some, the revelation utterly destroyed the relationship between parent and child, grandparent and grandchild.
Can we truly talk of “cure” if we leave hearts and minds so ravaged by the cancer experience that family bonds are broken years later as a result?
I work from home and live alone (unless you count my guide dog and 15 year old cat – which of course, I do). I receive very little feedback, and that can be exceedingly draining. But I revisit the stories of the families I work with, and learn of – the families I am working for. I remind myself of what the small steps cumulatively are achieving and will achieve in the future. They fuel me for the next day, next week, next month, and suddenly I find another year has passed.
My guide dog, Annie, has accompanied me to four SIOP World congresses (London, Toronto, Cape Town and Dublin), and to Kenya. While gentle Tosca provides purrfect love around the WE C Hope office.
A Few Tips from the Front
Based on my experience, my humble advice to parents of children who received treatment to both eyes:
Give your child the skills early on that they may need if their sight changes in the future. Celebrate every victory, but don’t be complacent. Chemotherapy has replaced radiotherapy in the last 30 years, and new treatments are emerging in the arsenal against retinoblastoma, and this is a huge step forward in saving sight. However, we do not yet know what the long-term consequences of these treatments may be. We don’t know whether the sight that is saved in childhood will be at risk in later years. To do the very best that we can for children now, we should prepare them for every eventuality.
Treatment has moved on significantly from the time I was treated in the late 70s. Everyone around me assumed that my good sight of childhood would remain stable. I was never taught Braille or worked with screen readers because it was assumed I would never need to learn. Now my ear has no tolerance for a gabbling voice. I much prefer quiet background music when I am in deep work. A screenreader intrudes on my focus.
I think my path now may have been easier if I had learned as a child the skills for working with very limited sight. Learning new ways to work after a lifetime of operating from a position of sight is very challenging physically, mentally and emotionally. Especially when you are working with inadequate equipment.
Encourage your child. Take time to find out about their lives, their work, their achievements, their goals and dreams, worries and fears. The paths they take may not be the ones you wanted for them, but if they are right for your child and bring them peace and joy, let them be free to find their wings. If you are proud of who they are and what they’re doing, say so. Not hearing this can burn a child’s soul, even in adulthood.
Let your child make their own choices as they grow and start to think about creating a family. Remember, they have grown up with retinoblastoma. They live the journey every day. Their experience will be very different from that of the parent who learned about this cancer for the first time the day the diagnosis was delivered. Their perspective will differ from the parent who supported their child through treatment with none of the assistance that exists today.
Please, please be careful with your words. Please do not ever tell your child you would have chosen to terminate them (even if that would have been your choice). That is truly one of the most devastating things a child can ever be told by their parent. Let your child be their own person, make their own decisions in relation to their life experience. They will likely love you more for that gift.
When I feel gloomy about my lot, and apt to think like Frodo Baggins that I wish these things had never come to me, I recall Gandolf’s wise words: “So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.” — Fellowship of the Ring, J.R.R. Tolkien.
I did not choose to have retinoblastoma, but I choose to move forward every day, even with the challenges and frustrations, to help create a better future for children and families and survivors. To support the professionals who innovate for ever advancing care. I am proud and honoured to be part of this community.