Life After Enucleation: 8 Retinoblastoma Survivors Share Hope
Monday July 20, 2020
Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.
Abby, trekking across Tanzania’s Great Rift Valley in 2014 to raise funds for WE C Hope.
My father lost both eyes to retinoblastoma before his second birthday. I was screened from birth and diagnosed with bilateral retinoblastoma early. Despite the aggressive tumours, both my eyes were saved, but my right eye never had what I would describe as usable vision.
Late effects of radiotherapy began to manifest in both my eyes in my early 20s, gradually becoming more complex and severe. While doctors believed they could preserve my right eye, it gave me no meaningful sight and a great deal of pain. I ultimately requested enucleation when I was 25 years old.
As a child, I was bullied due to the appearance of my eyes – small and shrunken by treatment. I was incredibly envious of my sister, who had (in my opinion) a beautiful prosthetic eye. Although she had been screened from birth, enucleation was the only safe option when cancer was eventually diagnosed one month before her 3rd birthday. Growing up surrounded by the confidence of my father and sister gave me the courage to ask for what I needed as a young adult.
Parents who are contemplating the future after enucleation often make sweeping statements about the hopelessness of their child’s outlook. They ask me if their child will be able to do things such as drive, cook, live independently, marry, have children, get a job… I regularly share what I and my family have done, to give hope.
Between my undergraduate and postgraduate studies, I worked in Kenya, where my father was born, with a community development charity. My experience there was varied, from tagging and documenting black mamba snakes on the shore of Lake Victoria to helping establish a Women’s Credit Union Co-operative that is still active today, co-leading two school fieldtrips to the Kakamega rainforest, and backpacking solo around East Africa.
With the right support, limited sight is what you choose to make of it. People have preconceived ideas of what an individual with low or no sight can and cannot do – or even what we should and should not do. But no one has to be limited by someone else’s ideas. When I began working with a guide dog in 2012, I was told my days of travel in Africa were over. But Annie accompanied me to the 2015 congress of the International Society of Paediatric Oncology (SIOP) in Cape Town, and became the first guide dog to visit Kenya.
Many experiences clamour for the title of most exceptional: holding a newborn lion cub as a child, studying at Oxford University, taking a spin in an F50, microlighting over Victoria Falls, helicopter flight over Niagara Falls, visiting the Grand Canyon, swimming with dolphins in the Bahamas and manta rays in the Indian Ocean, beachcombing and paddling between tiny islands in Fiji, establishing a charity, walking the full length of the River Thames over 16 days, trekking 100k across Tanzania’s Great Rift Valley (twice), camping under a wild African sky, walking across burning coals hotter than 1,000°F (three times)…
Dark threads run through my life as a retinoblastoma survivor – that is undeniable. But the threads of gold and silver are vibrant, and I know their light is hope for the parents who seek my counsel.
Below I have gathered seven perspectives from fellow survivors treated with enucleation as children. We hope our collective experiences and insights encourage parents walking through retinoblastoma treatment and beyond to a thriving future with your own child.
I am a retinoblastoma survivor of 48 years and never perceived my monocular condition as a disability. Without any known family history, being diagnosed with bilateral retinoblastoma was overwhelming for my mother and father who were in their early 20’s when they had me as their first born back in 1972.
They instilled in me these three things:
- You have a good eye (term used when I was 2 years old, changed to useful vision at age 9), and you have a bad eye (term changed to prosthetic/blind eye at age 9), so no playing with sticks, BB guns, or anything that could hurt your good eye because you will not be able to see;
- You can do anything you put your mind to; and
- You are not disabled, but unique.
Being so young when I lost my right eye to retinoblastoma may sound bad, but I did have useful 20/20 vision in my left eye; resulting in a unique opportunity for me. My parents made sure I learned that important life lesson. Some occupations were forbidden since they required binocular sight (i.e., playing high school contact sports or joining the military to become a fighter pilot). However, I learned using my “good” eye enabled me to still be part of the contact sports team as team manager. I became the high school’s first student athletic trainer, and this led me to a career in the medical field.
I learned that having my one “good” eye and one “bad” eye would not define me as a person, nor stop me from doing what I wanted to do as I grew up in a world of binocular vision. I have become a vital part of providing health care to others in need by becoming an emergency medicine physician assistant (PA). I knew I could not fly jet airliners or US military aircraft, but I was able to demonstrate my visual abilities and get my private pilot’s license, despite being told that wouldn’t be possible.
Unless I tell people which eye is prosthetic, they don’t know which is which. There are days I don’t think about it because I am busy serving my community as a volunteer firefighter-paramedic, or teaching my students at medical college how to become PAs, or because I focus on being the best possible and most loving husband and father to my daughter. I learned at a young age that having one “good” eye, and one “bad” eye does not define who I am, but my experiences and how I choose to live is what really matters.
Brian flew himself to an ocularist appointment.
I was born in London, United Kingdom in spring 1977, to an English mother and a Slovenian father. My parents were in Slovenia that summer when my mother noticed a strange glow in one of my eyes. She had read an article a few months before about Peter Faulk, an American actor who had Rb, so she had an idea what the glow could be. This was, in itself, a miracle. The Slovene doctor also recognised what it might be and told her to get back to London immediately to get the treatment I needed.
In London, my mother fought with the GP who did not recognise the urgency and would not refer me. I was finally diagnosed with bilateral retinoblastoma at 5 months old. I had surgery straight away on my right eye and radiotherapy on my left. No other relatives in my family have had retinoblastoma, apart from, very sadly, my children.
My vision in my remaining left eye is badly affected, but this is a result of the radiotherapy, not the position of any tumours. I use zoom text on PCs and my mobile phone, I hold screens close to my face to see them, and I use magnifiers to read other texts such as menus. I can’t recognise people very well and I do struggle when doing things such as cooking or walking unknown routes. This is vision I have when wearing glasses or a special contact lens – without these, I would be registered blind.
Despite this, I attended mainstream schools and university. I studied Fine Art Painting, have a Professional Graduate Certificate in Education, and a qualification to teach English as a Foreign Language. I am not able to drive a car but I would if I had perfect vision in my left eye. I have travelled both with a friend and on my own. I have taught abroad, but I do lack some confidence. I used to go scuba diving and have my Open Water Padi Divers Certificate. I am very happily married and have two gorgeous sons.
I have never seen the loss of my right eye as a bad thing. I have been upset with my vision loss in my left eye and have experienced difficulties with the after-effects of radiotherapy, but my right prosthetic eye has given me very little to complain about. It does occasionally get uncomfortable and watery, especially when I’m tired. I was embarrassed of it when I was younger and lacked confidence. However, I was very happy with the way my eye was made. Many people commented on how beautiful it was and were shocked when I told them it wasn’t real. They were very impressed by how realistic it looked.
Jana and her two yong sons
I had unilateral retinoblastoma with enucleation at six months old. It’s not what I would have chosen for my life, but we don’t get to choose. We do have the choice to make the best of what we have. My parents taught me from a very early age that I could do anything anyone else could do. Retinoblastoma would not be an excuse and the words “I can’t” were never to be spoken.
Growing up, I was involved in dance, cheerleading, soccer, gymnastics, track, volleyball, basketball, and fast pitch softball and excelled in each. I practiced harder, ran faster, and jumped higher than the next girl. Softball was my true passion. I went on in college to receive offensive player of the year, defensive player of the year, and MVP (Most Valuable Player) of our college softball league. MVP of the collegiate softball league after Doctors had said I would never play sports.
My career as a business owner with locations in the Midwest has been a fun endeavor. I have a husband of 18 years and an amazing daughter and fun-loving son, ages 14 and 8. My hobbies include swimming, boating, rollercoasters, and flying. Yes, flying. My husband and I are both private pilots and love to take to the skies. Just as in life – the sky is the limit. No excuses. Go be amazing, and enjoy!
Julie has her pilot’s licence, despite having a prosthetic eye.
Known for my minority mindset, I empower others to live a life out of the ordinary. I performed in elite sport for over 20 years, competed at two Paralympic Games in two different sports and became England’s most capped and most decorated blind footballer.
Yet, as a motivational speaker, I have a responsibility to share the success and the struggle. Whenever I speak in schools, I can guarantee one question the children will ask. “Why do you wear sunglasses?”
“Do you want the truth?”
“Can you handle the truth?”
I have to take their word for it, but at least I’ve issued a disclaimer. I tell them I didn’t always get Ray Bans for free. I take off my sunglasses and show them my eyes.
The left one is fake but looks real; the right one is real but looks fake.
Aged just fifteen months, a Harley Street consultant diagnosed me with bilateral retinoblastoma. My mother noticed a whitening in my pupil and a reddening of the iris. She had taken me to the local eye hospital, but they didn’t have a clue what it was. In 1974, few doctors knew a baby could get cancer, yet alone cancer of the eye.
After a late diagnosis, the focus was saving my life rather than saving sight. The doctors wanted to enucleate both eyes, but my family begged them to save one. The radiotherapy destroyed the cancer cells as well as some of the surrounding healthy tissue. Over time, my cornea became scarred and discoloured from a lack of moisture.
Growing up, I forever faced the unenviable choice of complete blindness with eyes that looked normal, or keeping the little sight I had and coming to terms with being stared at like a freak. My eye even scared little children, which was a traumatic experience for me too.
Eventually, I lost all my sight anyway. My remaining eye gives me pain every day, to the extent I’m still thinking of having it removed.
But one thing is for sure. My experiences helped me develop the resilience you need to thrive instead of survive, because there is no success without struggle.
Eleni, the Netherlands (from Greece)
I am 28 years old. I have a Master’s degree in International Affairs, and I work in philanthropy, investor relations.
I am not sure I have all the answers in life. However, I believe I have managed to prove many statistics wrong!
I had bilateral retinoblastoma. Quite aggressive, it led to enucleation I lost a high percentage of vision in my other eye.
I owe my success to my visual impairment. Since I was a little girl, I had to be a problem solver every day of my life. Living in a not so accessible and not so inclusive society, I had to be 10 times more resourceful than other kids my age. I built on that. I used it. It made me shine later on.
What will make you stand out in the professional life, what will turn you into a leader, are your personality traits. I can assure you retinoblastoma can make you strong. It can build your intuition, and it can make you resourceful and understanding.
These four qualities are the main assets a leader should have. The professional world is longing to find people with this multidimensional way of thinking.
My message to parents is that your child will be great, and you should believe that because you need to be their biggest fans, their champions, their ambassadors. And believe me they will be and they will stand for others. Raise a leader!
Eleni in front of the Jet d’Eau in Geneva, Switzerland.
At nine years old, the limited sight in my left eye was brightened by the red sand and stone of Ayres Rock, standing vast and alone amid the desert.
“It was the air I recall so well,” said my elderly globe-trotting neighbour, who’d sailed down under.
“I’ll reach there one day!” thought my young, excited self. And 30 years later, I fulfilled that childhood dream during a solo tour of Australia.
My adventure started on the far south island of Tasmania. I boarded the Tenacious, an accessible tall ship where wheelchair users can reach the top of the mast, and vision impaired sailors take the helm. Our 6 day cruise past the Bass Strait Islands to Melbourne was my third with the Jubilee Sailing Trust. I’d already enjoyed two wonderful island-hopping adventures around the Caribbean with fellow able, disabled sailors.
In Melbourne, I indulged my 15 year-old-self with a visit to Neighbours’ Ramsay Street, thanks to the willing elbow of a friendly Show Around guide. Show Around’s easy-to-use app and welcoming guides were key to my exploration of interesting places when I didn’t have friends in the area.
Meeting up with friends was a wonderful part of the trip, especially those I only knew from our Facebook retinoblastoma community. In Wodonga, I visited fellow Rb survivor, Cheryl, and her husband Nic. I’ve since welcomed them to Wales, and we’ve shared fun times in London too.
Distances in Australia are vast, but along the Great Ocean Road, we miraculously drove from Torquay to Anglesey in just 30 minutes! A much shorter ride than the journey from the south coast of England to the North Wales island where half my family live.
The journey north was long with anticipation. Limited sight in my radiotherapied remaining eye means I often miss out on the visual splendour of a view. But not this time…
I breathed in the desert air as my eye raised up high, captivated by the large, bright, shimmering red rock – Uluru!!!
I paced forward, arm in arm with a former work colleague, now home in Australia. The red splendour grew larger, and finally I stretched out my fingers to touch that ancient, natural creation. I stroked the stunning Aboriginal crown, never considering climbing their sacred place. Bending down, I swept up a little rich, red sand into my hand, letting it run through my fingers as I captured the sparkle of that sunset, and the down-under dream I’d held so long.
From the stillness of the desert to the song of the rainforest. Touching velvety leaves and moss that covered everything, the heady scent of wet wood mixing with constant raucous twittering of many birds. A trip to an animal sanctuary allowed me to pet a koala, something I really appreciated as I can’t see animals even when they are close up in captivity.
Suddenly, this amazing 5 week wonder of exploring incredible places, meeting great friends and guides – old and new, was over. Returning to the antipodes is definitely on my to-do list, to enjoy New Zealand. This will, of course, be when the mighty All Blacks rugby team take on the Dragons of Wales!
Ffion at Uluru during her solo tour of Australia
My mother gave me life not once, but twice. I was the first child/grandchild on both sides of my family; I was the fourth generation paternally/fifth generation maternally, all alive at the time of my birth. I was the first and so far, only person in my family to be diagnosed with retinoblastoma. This happened when my mother was well into her second pregnancy. She began noticing a change in my eyes; after persistent searching, a doctor familiar with retinoblastoma gave my parents the news.
Imagine having to wrap one’s head around a cancer diagnosis for a child not yet three; while simultaneously being pregnant with another! My parents wondered if the recommended treatments could wait until after the birth. There was no time; the tumor was rapidly growing towards my brain. A decision to wait would mean the birth of one child, but the death of another. With a sense of loss, my parents made the difficult decision for enucleation.
Fortunately, the disease did not rob me of my life, or my joy. Instead, it affirmed valuable life lessons. I learned that difference breeds struggle – but struggle births hope. Retinoblastoma caused me to persist in the face of fear and uncertainty. Retinoblastoma taught me the importance of paving the way for others, often venturing in waters uncharted. All children diagnosed with retinoblastoma embody this potential, if given the wings to flourish.
With 20/20 vision in my left eye, my parents surrounded me with books and enriching opportunity. I became a speed reader, while excelling academically. Extracurricular activities included: ballet, Girl Scouts, singing, playing the violin, and participating on the high school precision dance team.
I entered college with a business mindset, pursuing an Associate of Arts degree. My early career included stints in federal/state government, as well as academia. Later, I went back to college, pursuing Bachelor’s study in Organizational Management. Upon completion, I was inducted into the Omicron Psi National Honor Society. Currently, I work as Manager, Continuing Education Provider Services, with the American Speech-Language-Hearing Association.
Make no mistake, the accomplishment and potential of our survivor community is limitless!
In our last blog post, published on July 6, 21 year old Grace shared her experience of growing up with a prosthetic eye, and the value of having a support system. She authored together with her mother to present a parent-survivor perspective.