Always Life Before Eye – So Why Are Curable Children Dying?

Saturday September 15, 2018

With parent experiences woven throughout, WE C Hope CEO Abby White asks why curable children are dying after eye-salvage therapy, and what can be done to prevent this tragedy.

Disclaimer: The views and opinions expressed in this article are those of the author, Abby White, in her personal capacity and do not necessarily reflect the views of WE C Hope as an organization.  The original version has been updated to provide clarity on the use of IAC as an eye-salvage therapy.

Acknowledgement – I would like to thank the mothers of Damian and Max for sharing their thoughts, experiences, and children’s photographs for this article, and for their editorial review.  My sincere gratitude to the many parents whose brave voices woven throughout tell the real story.

Real Life Superheroes

Damian meets his hero, Spiderman, and salutes with Spiderman’s hand gesture (extending his thumb, index and little fingers while folding down his middle and ring fingers), which is also the sign language ‘ILY’ or ‘I Love You’ sign.

Damian salutes his hero, Spiderman, with his own web-slinging I.L.Y hand gesture.

Meet Damian, impish superhero with a captivating smile that radiates joy and sunshine. Lover of first responders, fire trucks and all things superhero.  Damian was diagnosed with cancer in one eye when he was two years old.  He was completely curable at diagnosis. So why did his parents have to bury him in November 2016, at just four and a half years old?

Damian began Intra-Arterial Chemotherapy (IAC) treatment with the goal of saving his eye filled with cancer.  Enucleation (surgical removal of his eye) was not offered as an option at diagnosis, and his parents were unaware of the risk posed to his life by eye-saving treatment.  Like countless other parents around the world, they had no prior knowledge of retinoblastoma.  They trusted their son’s expert physician to guide them in making the best decisions.

When used appropriately, IAC is a very safe therapy.  The vast majority of children treated with IAC have no serious side effects or relapse beyond their eye.  However, Damian’s story is not unique, and for this reason I raise concerns, and highlight some risks, about the use of IAC (and other eye-salvage therapies) when children have advanced intraocular retinoblastoma.

How Do We Define Advanced Intraocular Retinoblastoma?

Retinoblastoma is staged to predict how effective different treatments are to save the child’s life.  Each eye is staged independently to indicate likelihood that a treatment can safely save the child’s eye, and achieve useful vision.  Cancer stage for a bilaterally affected child is based on the worst affected eye, as an indicator of risk to the child’s life.

When clinical exam and imaging results suggest retinoblastoma is contained in the eye, it is staged as “intraocular retinoblastoma”.  When results indicate that cancer has escaped the eye, it is referred to as “extraocular retinoblastoma”.

Two systems are commonly used today to stage retinoblastoma: the International Intraocular Retinoblastoma Classification (IIRC groups A to E) and the TNM-H (Tumour, Node, Metastasis, Heritability).  TNMH stages T1a to T3 are broadly similar to IIRC A-E, with some distinct differences.  WE C Hope provides a detailed explanation of both staging systems.

Advanced intraocular retinoblastoma refers to Stage TNMH T3, or IIRC Group E.

Parents need to know the child’s individual staging at diagnosis, and understand what it means.  This is vital to enable their informed decision making and consent.

Curable Children Are Dying After Sight-Saving Therapy

Intra-Arterial Chemotherapy (also called Ophthalmic Artery Chemosurgery) targets chemotherapy directly into the eye via catheterization of the ophthalmic artery.  Thanks to the research and innovation of leading retinoblastoma-focused practitioners it is a very useful and highly successful treatment for many children with both unilateral and bilateral retinoblastoma.  However, when cancer within the eye is very advanced, cancer cells can escape and spread to other parts of the body.  Eye salvage therapies may then look effective for the eye.  But cancer may spread from the eye and not be recognized, which poses a very high risk to life.

Advocates of IAC state that the rates of relapse and death among children receiving this treatment are no greater than among children treated with systemic chemotherapy.  However, I note from children’s stories available on blogs, personal journal websites and social media, a number of relapse and death events following IAC are not recorded in the published literature.

Through direct conversation with bereaved parents in our Facebook community, and correspondence to WE C Hope, I know of six children in the USA alone, including Damian, who have died following IAC treatment since November 2016.  All were curable at diagnosis by immediate enucleation.  Also within our Facebook community, I know of two more children whose cancer has spread beyond their eye, who are now receiving intensive therapy or hospice care.  In contrast, I know of one child in the last three years whose cancer has spread following systemic chemotherapy to save the eye – the child is cancer-free today.

I also know of multiple children who have relapsed following immediate eye removal surgery.  These relapses may have been prevented by systemic chemotherapy following enucleation – high-risk features can be identified by microscopic pathology examination of the removed eye, though what constitutes a high risk feature remains in debate.  However, this is a very different scenario from the child who relapses after eye-saving treatment.

“Our ocular oncologist told us metastasis usually only happens in developing countries where Rb is often diagnosed late. When Max was being treated for metastasis, I learned that a handful of the doctor’s very own patients treated with IAC at the hospital, well before Max, had developed metastatic disease. I wished he had told us about these other children so we could have made more informed decisions about our son’s care. I wish I’d known we were putting his life in jeopardy while trying to save his eye – we would have absolutely enucleated, had we been given different information.”

Max is pictured against a backdrop of trees and overcast sky. Bald from chemotherapy, he holds his hands above his head, a small smile on his face.

Max’s intensive cancer treatments and death were entirely preventable.

The Critical Roles of Pathology and Clinical Evaluation

Intra-Arterial Chemotherapy treats only cancer contained within the eye.  If cancer is advanced and microscopic cells are already present in the eye’s outer layers or beyond, they will be left untreated while eye exams suggest an excellent response to treatment.  These microscopic cells are not visible during Examination Under Anaesthetic (EUA) or with imaging such as MRI or ultrasound.  They can only be found by expert pathology after enucleation.

Though highly curable, retinoblastoma is very aggressive.  Cancer cells can spread from the eye into orbital tissues, travel along the optic nerve to the brain, or through the bloodstream to bone marrow.  When a child’s eye is surgically removed, accurate, timely pathology is vital to identify high-risk features and guide effective post-operative care.

A pathologist carefully examines the eye for microscope signs of cancer, focusing on specific parts known to be high-risk conduits for spread.  Doctors use the pathology report to decide if more therapy is needed.

When chemotherapy is given before eye removal surgery, cancer cells at key landmarks within the eye may shrink back in response to treatment.  The pathological examination of the removed eye may suggest no further treatment is needed.  Depending on the child’s stage of disease at diagnosis and course of treatment before enucleation, the risk of cancer cells floating unseen beyond the eye may be high.  Clinical evaluation, together with the child’s history, pathology report, and open discussion with parents can all work to avoid under-treatment of the child at risk.

“I truly believe that had Damian’s eye been enucleated at diagnosis, he would be alive and very healthy today. I also believe that had chemotherapy been started at enucleation, when the MRI and pathology report were positive, he would be here. But they waited almost 9 weeks to start chemo. I will never forgive his team, I wholeheartedly believe they are responsible for my son’s death.”

“We weren’t given a copy of the protocol – we didn’t know we could ask for it.  We weren’t given the pathology report – didn’t know we could ask for it.  We were told pathology was clear.  After her cancer relapsed, we learned pathology was not clear, but choroid was in that grey area where you disagree.

If we’d had the report or the doctors had been open, we could have asked more or had a second opinion.  We might have avoided the stem cell transplant that caused so many problems.”

“At the end of 2016, my daughter (bilateral) had a second relapse in her left eye, close to the optic nerve, and the doctors wanted to treat it with IAC. Days before Christmas, it looked like the first treatment had worked.  But at the end of March 2017, we learned the tumor was still alive. It had grown like crazy and started seeding in the jelly middle of her eye. The doctors decided to enucleate a couple of weeks later.

Pathology found aggressive tumor growth into the choroid, beginning to infiltrate the sclera. The latter they didn’t tell me – I read it in the doctors’ journal 6 months later.  This resulted in 4 rounds of heavy chemotherapy. It seems we were very lucky the cancer didn’t escape, but not a day goes by with me not worrying about the future. If I could turn back time, I would ask them to enucleate the eye instead of doing IAC.”

“Why do some doctors give chemo for PLONI [post lamina optic nerve invasion] and some do not?  Isn’t there enough information to help show whether it should be done, and that must be the same for all kids – either cancer is post lamina or it isn’t!  Why so much disagreement?

My child had PLONI and our hospital said no chemo, but the second opinion doctor said we should do it.  If we hadn’t, would we have put our child at risk?  That is a very scary thought and not good for families who don’t know or can’t get a 2nd opinion.”

“After enucleation, the ocular oncologist wouldn’t discuss further treatment until we received Max’s pathology report over two weeks later. Even though this report confirmed Max had a massive invasion of the cilliary body, the doctor advised us against adjuvant chemotherapy, telling us the chance of the Rb spreading was slim. We sought a second option – a pediatric oncologist at another children’s hospital was very concerned about Max and said adjuvant chemotherapy should have been started immediately after enucleation. By the time we began treatment, a little over a month had elapsed. Our son had 6 months of systemic chemo. Four months later, we learned his bones were full of disease. We’ve asked ourselves time and time again if starting systemic chemo immediately would have prevented this metastasis.”

Damian stands next to a sunlit window, his hand splayed against the glass. Sunlight halos the crown of his full and neatly cut brown hair.

Damian experienced the joy of a cancer-free, treatment-free childhood for less than half his life.

Cancer Contained Within the Eye Should Not Threaten Life

When cancer is truly contained in the eye, and efforts are made to save that eye, the child is curable, and relapse beyond the eye is preventable with close monitoring and appropriate treatment.  If a child’s life is in danger, immediate removal of the eye is necessary to prevent cancer spreading to the brain, bone marrow or elsewhere.

The vast majority of parents making treatment decisions for their children have never heard of retinoblastoma before diagnosis.  They are likely still in shock when talking through treatment options, and trust doctors completely to provide all the information necessary to enable them to rapidly make fully informed decisions.  If the risks of treatment are not clearly explained, how can parents ever make the best choices for their child?  Especially so if their immediate focus is alarm and distress about their child’s possible loss of sight in the affected eye, and the lifelong implications of blindness.

“My wife and I had such an overwhelming need to tell our son ‘we did all we could to save your eye’.   We became addicted to hope with each new treatment.

No one seemed to see the state we were in.  No one tried to stop us, or tell us it was time to quit.  I guess we were doing exactly what was wanted of us,

Those conversations are so difficult, but we need the professional guidance.  We rely on your expertise and independent, unemotional view of things.”

“We tried chemo because the thought of enucleation absolutely sickened me.  The chemo didn’t work and we did surgery anyway.  Afterwards, I was calmer than I thought I’d be and the prosthetic looks great so people don’t even know it’s a fake eye.

I think if I’d had a chance to see some photos of the immediate after-surgery (patch, empty socket etc) and meet a family or adult who went through it, I wouldn’t have been so afraid and maybe we would have done the surgery right away.”

“My daughter was diagnosed with one tumour in her right eye. She had four IAC treatments. After 2 cycles, the NHS stopped the treatment – we were told some adverse reactions needed to be investigated. Our private insurance funded the remaining cycles, but treatment was delayed while we sorted this out. The previous dose was doubled when the IAC resumed as the tumour hadn’t stopped growing. This resulted in paralysis of the third nerve, causing her eye to fix, and she lost all sight in that eye after the last treatment, even though the tumour had shrunk.

A few months after the last treatment, she began having pain in her eye. An EUA showed some bleeding in the eye and leaking blood vessels, but her doctor didn’t seem concerned. He scheduled her next EUA for 16 weeks later.

A little after six months past her last seen active tumour, we noticed a discolouration in her Iris. An EUA that week found at least eight seeds in her iris. Her eye was removed immediately and her ophthalmologist recommended chemotherapy, but this did not happen straight away. The medical team were unsure of how to treat her as they said they hadn’t seen tumour spread to the iris before.

I asked what the outcome would be if it had spread, and to where. The answers obviously were not good – I was advised blood or bone and in that meeting it was decided further chemo would start the following week. It took months to get to this point – a very distressing and worrying time. My daughter started chemo on Boxing Day (26 December), over two months after her eye was removed, and four months after she first started complaining of pain in her eye.”

“Damian’s doctor always avoided discussing the tumor staging when I asked him about it. He said it’s hard to grade it because there are so many factors. I never knew until Damian died and I read his medical records.”

Damian and his mother hug and share a smile, leaning against a tree. Damian is bald, wearing a spiderman t-shirt.

Damian and his mother share a hug and a smile.

“Why do doctors on the one hand say people with heritable Rb should avoid radiation, and on the other hand feel it is ok to expose a child to radiation during IAC catheterizations?  You can’t have it both ways!

We weren’t told about fluoroscopy and learned of it through Facebook.  We should not hear info in this way.  We might still have chosen IAC, but we should have been given all the info, even the stuff doctors think is inconsequential.”

“I wish I had known more about the risks involved with IAC before I leaped into the treatment. My daughter was diagnosed bilateral at 9 months old. She had systemic chemo which left her left eye with heavy seeding. We then did 2 rounds of IAC. The treatment was harder on her body than systemic – she lost her hair, hospitalized for being neutropenic, and required blood transfusions. She never had any of these side effects during systemic chemo. IAC didn’t touch any of the seeds. With no further options, her left eye was enucleated at 18 months old.

She had just reached “Survivor” status last November. On December 28, 2017, she was diagnosed with stage 3 Translocation Renal Cell Carcinoma. This second cancer may have been caused by chemo she received for her retinoblastoma. I’ll always have this in the back of my mind. If I had been more educated, I would’ve probably just done enucleation instead of IAC.”

“My daughter had grade E unilateral Rb with major seeding.  The doctor offered IAC or enucleation.  We wanted to save her eye, but the cancer scared us so.

Pathology was positive, but not so bad as to need chemo.  Thank God we chose surgery – my stomach turns at what could have been, had we chosen IAC.

Why were we offered IAC?  Desire to avoid surgery is very strong.  We should not be put in that position when so vulnerable and less able to be objective.”

“Max was diagnosed with unilateral group D retinoblastoma when he was 8 months old. Our diagnosing ocular oncologist said he was a perfect candidate for IAC, and Max received his first treatment. When we returned home after a whirlwind few days, I began to research the treatment because the risks we were told about (stroke, bleeding out of the femoral artery, destruction of the artery behind the eye) had me very concerned.  

Through this research, mostly in articles written by the doctor who brought this treatment from Japan and pioneered it in the U.S., I learned he was teaching it to doctors around the country, and seeing amazing results. We met with him in June of 2012. He told us his center had the most experience and more success with IAC than any other hospital, talked us out of enucleating Max’s eye, and told us IAC would not only save Max’s eye, but also preserve his remaining vision.

We were completely sold, and switched Max’s care to our new hospital, where he was a patient until December 2013. During this time, Max was treated with 5 more rounds of IAC, laser, cryo, and finally enucleation, but not before the cancer escaped his eye and metastasized to his bone marrow.”

Why Are Curable Children Dying?

Damian relaxes on a couch, hands behind his bald head. His t-shirt reads

Doctors who guide and support parents through enucleation are fully focused on saving life.  The same focus on saving life is most important when embarking on saving a child’s eye.

The number of children who experience metastatic relapse following eye salvage treatment is very small compared to the many hundreds of children whose lives and eyes are saved.  But their lives matter, their relapse was more likely preventable if the eye had been enucleated at diagnosis.  We must learn from each child who relapses, and every child who dies because of retinoblastoma.  Change must occur to ensure this unacceptable tragedy does not happen again.

Sight, cosmetic appearance of the eye, telling parents what they want to hear, clinical research, institutional competition and reputation, ego… nothing is ever so important that it can justify risking the life of a child.  No child who is curable at diagnosis should die from retinoblastoma.

“My Damian lost his life to unilateral, non-heritable retinoblastoma November 5, 2016. Stay on top of your children’s doctors. Things can change and it can spread so quickly. September 7, Damian had No Evidence of Disease. September 27, they put him in hospice because it had taken over his brain and spinal fluid. 20 days is all it took.”

“When our child was diagnosed with Rb, we were told to do bilateral enucleation here, but we found online that other countries can save the eye.  We contacted a big Rb hospital and they said “yes, come over”.  So we pulled all our money together, including a big loan and from friends and flew to that hospital.

The doctor there told us both eyes must be removed and now it is so urgent.  We wasted precious money coming to that doctor.  Why did he accept to see us?  Now we have nothing, not even our child!”

“Max was hospitalized for weeks at a time during the intensive treatments that followed, and his suffering was immeasurable. Thanks to his amazing caregivers, he miraculously recovered – though his recovery was long and slow, and involved months of isolation from friends and family.

Two years and four months after his stem cell transplant, Max was diagnosed with treatment-induced leukemia caused by the high dose chemo necessary to cure his very unnecessary metastatic Rb. Right when he was finally getting to live like a “normal kid,” our world was turned upside down. He was again hospitalized for months at a time to receive more high-dose chemo and underwent a bone marrow transplant which ultimately failed. He died four months after diagnosis from a lung infection his beleaguered body could not fight off.”

A straw hat shading his bald head, and a discreet pouch tucked by his side feeding his NG tube, Max enjoys his turn on a swing.

Max lived every moment he could, even as days and years of childhood were stolen from him.

Is Sight-Loss Stigma Killing Children?

Society places increasing weight on the importance of sight as a prerequisite for existence in the world.  Perhaps people believe that to lose the sense of sight would somehow render them inhuman.  The fear of blindness runs deep, and harmful perceptions are further trussed in the everyday negative language associated with blindness.  “Dark” and “black” for example are used in culture to denote sinister and frightening scenarios.  “Blind” also describes someone unwilling or unable to perceive or understand something, or incapable of reason or control.

Is this why many sighted people cannot bring themselves even to use the word “blind” in reference of blind people – averting their own gaze as they uncomfortably use words like “visually challenged”, “sight impaired” or the nauseating “differently abled”?

“What gets me most is the way media sensationalizes treatment or research “breakthroughs”, so the report sounds far more dramatic than the reality for families desperately searching for their child’s miracle.

The hype around IAC particularly seems to have fuelled a dangerous trend to save eyes at almost any cost.  We are bombarded with messages that eye removal is now a bad thing for us to choose.

Kids are dying as a result!”

The implications of this in retinoblastoma care are deeply disturbing.  Have we really come to a place of assigning a higher value to a dangerous cancer-filled eye than to the whole life of the precious child to which the eye belongs?  Are we now more comfortable with turning our hearts and minds away from parents who have lost beloved children, for the short-term benefit of easier conversations with parents who desperately hope for a cure that will also save their child’s eye/s?  Does that do justice to either the bereaved parent or the newly diagnosed family who gives us their trust?

Of the six children I know who have died in the USA in the past two years, five had cancer in only one eye.  The removal of one eye is not considered disabling.  Removing one eye reduces the visual field by one third.  One eye with good vision is considered driving standard in most countries, including the USA. Early enucleation enables excellent cosmetic rehabilitation with an artificial eye.

“Why is IAC used to try to salvage eyes in kids with unilateral Rb with no useful vision?  Wouldn’t the child lead a healthier life and avoid having to endure months of treatment with one life saving enucleation?”

“‘Yes we can’ is not the same as ‘yes we should’.”

Why Put the Eye Before Life?

The child who dies from relapsed unilateral retinoblastoma may have had advanced cancer filling the eye at diagnosis, or attempts to save the eye were continued too long, giving time for the tumour to spread.  To save an eye with limited or no sight requires several years of treatment, and close follow up with invasive eye exams under general anaesthesia.  This pathway incurs physical treatment side effects,  emotional and psychological effects, delays in natural development, lost days when the child should be free to play and learn – years of childhood that can never be recovered.

Remember, this child has a perfectly healthy other eye.  Why would we risk the child’s treasured, irreplaceable life to save one dangerous eye?

“We chose IAC for our child because it sounded such a good solution to avoid systemic chemo effects. 

We had multiple neutropenic episodes during IAC, but we had no oncologist as chemo was done in the OR – the ophthalmologist kept saying “go to the pediatrician”, and the pediatrician said “I don’t know cancer, go to the Rb doctor”.

Kids receiving IAC should all be followed by pediatric-oncologist.  My concern is that if these episodes are not being acknowledged by the ophthalmologist, they are not being documented fully in research data.”

“My friend’s son had 6 IAC treatments and 21 days of radiotherapy, only to have enucleation a year later, but no chemo after.  6 months later, he was found to have metastatic Rb in bone marrow.

More grueling chemotherapy, stem cell transplant and 3 more weeks of radiotherapy.

He had unilateral Rb…  This is so, so wrong!!!  Why is this allowed to happen?”

“Doctors do not tell people the negatives behind the treatment. My daughter underwent one round of IAC for unilateral retinoblastoma. Her eye swelled to the size of a golf ball for a month. The doctors told me this was normal. After a month, they finally listened to me, made me rush to the ER. It was too late though. She lost all vision in that eye due to an unknown reaction. Did they tell anyone this could or would happen? No.  23 months after diagnosis, and many other treatments, we took her eye out because she had too many tumors to count.”

“Do certain treatments cause seeds?  Is it normal to see them post chemo?  When does “a lot” of seeds become “too many to treat safely”?

I have noticed that a lot of kids (including my own) who have IAC have great results but relapse 6-18 months later with widespread seeds.  By that point we are on 3-4 monthly exams so the relapse is seen late and treatment is much harder.”

“My child had unilateral Rb.  She was only a year old, so judging how much sight the eye had was difficult.  We preferred enucleation to spare her the agony of chemo and repeat EUAs. 

The doctors made us feel we were terrible parents, that our choice was the worst possible.  We felt pushed into treatment we never wanted.  Ultimately, it failed and she had enucleation anyway.  We hate that she went through all that treatment for nothing.  Why such damaging effort to save a unilateral eye?”

The Language of Success and Failure

DamianIn medical journals, reports of eye salvage research often define failure of the researched treatment as the need for enucleation.  The unwritten implication is that enucleation itself is a failure.  However, the opposite is true: enucleation is a lifesaver.  Saving the life of a child is never a failure.

Eye doctors are trained to save eyes, save sight.  Losing an eye in a patient may be perceived as a professional and personal defeat that bites hard.  Over time, that must have an impact for the ophthalmologist who cares and is dedicated to excellence.

I wish those of you who feel that sense of failure or loss with each surgery could see comments of parents on social media applauding the heroes who did timely enucleation.

“We chose enucleation for our daughter’s eye and have never regretted it.  More importantly, our now 19 year old daughter doesn’t regret it.  It kept poison from being put into her body in one form or another, years of monthly EUAs and the trauma of multiple hospital visits and stays, all of which have major medical and physiological impacts on a child and their families.

I urge doctors to support enucleation in a unilateral, large tumor case, as the end result from other treatment is usually an eye with little or no useful vision and wandering eyes that are very noticeable by others.”

“My son was 14 months old at the time of diagnosis. We were given the choice of enucleation or death. Simply put his eye had no vision and needed to be removed. He had 6 months of chemotherapy “just in case” there were any cancerous cells outside of his eye. I have never wished we had other choices. I simply look back and wish cancer didn’t exist! He is now a senior in high school! His enucleation has not held him back. He plays many sports, does well in school and has friends and a girlfriend. He is looking forward to college and possibly playing football there as well.”

Let’s work together to move eye-salvage research literature away from encouraging the incorrect and dangerous perception that enucleation is a failure.  We can seek full information and evidence for each eye that defines it as safe to be salvaged (small tumours, optic nerve clearly visible, etc.).  We can agree the features that predict where extensive, invasive, expensive treatments may fail, and put the child’s life at risk.  Let those eyes be promptly removed, so the child’s life is saved.

Hope Based on Evidence, and the Whole Child First.

Progress of eye saving treatments is exciting, and IAC is one good tool in the armoury to help save precious eyes and sight. However for many children, removing their eye is best for various reasons, and their best chance of cure. We must collectively reassert that the life of the child is far, far more precious than the eye filled with cancer.

“I believe IAC is an appropriate treatment for SOME children, but it is being overly used. I never want another family to go through what we have, but with this overuse and absolutely zero checks and balances, I fear that we will see metastasis diagnoses rise.”

Looking very small against the big pillows that surround him, Small Damian lies wrapped in his Spiderman blanket, an oxygen mask helping him breathe.

Please respect the memory of every curable child who has died.  Please acknowledge the suffering of every child whose relapse could have been prevented, honour the unnecessary loss and desperate family grief.

As a community of medical professionals, parents, survivors and advocates, let’s change the current trend of children needlessly dying or enduring years of unnecessary intensive therapy to reclaim their life.  Let’s invest nationally and internationally in education and pathways to achieve early diagnosis, which will enable more children to safely benefit from breakthroughs in eye-saving therapy.

As families and survivors, we can share our experiences, observations and knowledge in a strong peer support community, while we talk openly with the child’s steadfast medical care team about that child’s individual care needs.  We can educate ourselves, ask questions, and learn to advocate safely in this ever-developing digital age.

Together – families, survivors, medical professionals, and wider community – we can rediscover compassionate communication to enable important, lifesaving conversations that help distressed parents.  We can educate and support families when surgery is truly the best option, let them move forward without the fear of relapse.  We can help the children reclaim their childhood and grow up cancer-free.  Be our true superheroes by making intra-ocular retinoblastoma the 100% curable cancer it can be.

Damian should have been a vibrant, energetic six year old today, discovering the delights of Kindergarten, learning to write, running, swinging, climbing, and playing with friends.  Instead, his mother and father and brother have only cherished memories of scarce precious days when he was well between intensive treatments.

“People say that parents of children who had cancer are cancer survivors too. I refuse to recognize myself as a childhood cancer parent survivor out of guilt, because Damian did not survive cancer. I wish we had enucleated day one, I wish IAC had never been mentioned. He fought this horrible disease for 2 1/2 years. I miss him more than I can tell you.”

“My husband and I never want any other family to go through what we did. We would never wish our “what ifs” on anyone. What if we never sought out the expert ocular oncologist? What if we met the pediatric oncologist first? What if we’d enucleated at diagnosis? What if we’d asked more questions? What if we’d known to ask better questions? What if we’d listened to our guts when our son’s eye got worse and worse? What if we’d not been so easily reassured that he was fine?

The pain of living in this world without Max is almost unbearable. All of us, my 9-year-old especially, feel lost and incomplete. His absence weighs on us every day. Even a year after his death, the world without him still feels foreign and empty and quiet. We focused so much of our battle on his eye, when it’s his entire being that I miss. I can close my eyes and still feel his skinny body sitting in mine, his fingers twirling my hair like a security blanket. I would give anything to hold him again. I would give anything, anything to have him back, with only his one eye.”

Damian poses, clutching a Mickey Mouse toy to his side.

Superhero Damian, forever 4 years old.

Max poses, wearing his Team Mighty Max t-shirt.

Mighty Max, forever five years old.

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries.  After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.