The Retinoblastoma Rollercoaster

Saturday September 1, 2018

Lori Baños, creator and moderator of the Facebook group Rb Moms, reflects on the wild rollercoaster ride when a child is diagnosed with eye cancer. With contributions from group members.

The Greatest Adventure Begins

Baby SenaYou’ve just found out you are going to be a mother.  You’re in line, ready for the most exciting ride in the world. You have scans, tests, and doctor visits.  You have weird food cravings in the middle of the night.  Your pants don’t fit.  You feel your baby kick and see her on the ultrasound.  You are anxiously awaiting her arrival.

You are next in line! Your contractions are getting closer and labor begins. It’s time.  Ready or not, it’s your turn!

Your baby arrives and she’s perfect.  You hug her and realize you have never loved anyone or anything more than you love her.  You climb into a seat and buckle your seat belt.  When you take your baby home, you’ve never been so happy.  The ride begins to move.

You wonder if babies normally cry this much.  Should a baby’s eye water like this?  Why does she cry when we are in the car? Her eyes glow in the dark when I go to check on her in the night – is that normal? Her eye shows a white glow in all of the Thanksgiving photos at Grandma and Grandpa’s house – maybe it’s just the lighting there or a camera setting?

The ride slowly works its way down, circling and circling into the darkness and you wonder if you got on the wrong ride.

At the well child visit, the pediatrician refers you to an eye doctor because she also sees the glow in her eyes. You realize you aren’t imagining this. The ride begins a slow steady climb upward.

You are sitting in the room waiting to see the ophthalmologist.  The ride is near the top and fear sets in. The doctor comes in and examines your baby’s eyes and says the word “cancer.”

The Wildest Rollercoaster You Never Chose to Ride

You are on the wrong ride!  It’s a rollercoaster! The ride plummets down the hill picking up momentum and speed.  You’ve just been told your child has eye cancer and it is called “retinoblastoma.” The rollercoaster speeds through curves and turns leaving you reeling this way and that. Your mind races and you wonder how and why you got on this rollercoaster and not the ride you thought you were getting on.  

Your child is the only one in the area with retinoblastoma.  The cancer is rare, they tell you.  So you search the internet looking for support.  You look around and realize you aren’t the only one on this rollercoaster and the others look just as concerned and confused as you do.  

You find a few survivors and a few parents who have children with retinoblastoma on a listserv. You learn it is often referred to as “Rb.” On one visit to the hospital, you meet another family. Their son had retinoblastoma and was diagnosed one year before your daughter. The rollercoaster ride slows down a bit and you start to talk to others on the ride.

Your child has had one eye removed and finished treatment.  But soon you are told she needs more treatment; the cancer has returned. The rollercoaster jerks to the left and sends you plummeting into the darkness below. You are calmer and less emotional during this treatment.  You are now a cancer mom.  This is your “normal.”

The background image shows an illuminated rollercoaster twisting and looping through the dark over water. The first word of the text is highlighted in gold. Text reads: “Rollercoaster riding in the dark – that is what this experience is like. One moment we are flying high and the next we plummet into the depths as new tumours appear. I can’t see where we are heading. My only comfort is that I am not riding this coaster alone.”

The Comfort of Riding With Others

The rollercoaster bumps along in the dark but you see light up ahead. Your daughter completes treatment and you hear about a camp for kids with cancer and their families.  You go to the camp, starved for knowledge and the need to meet others.  The rollercoaster goes up a hill again.  At camp, you make lifelong friends and realize retinoblastoma is not as rare as doctors tell you.  The rollercoaster zooms down the hill, but this time it’s not as scary because you have someone next to you.  

Your child is cancer-free, but you’ve gone through a divorce and your friends don’t understand this new life you live. It’s filled with doctor visits and fear of recurrence and fear of a second cancer. Your friends all have “normal” children. You realize that you need a connection to others who understand. So you create a group on Facebook for moms of children with retinoblastoma. You call this group Rb Moms.

Knowing the Rollercoaster’s Ways Does Not Ease the Ride

Contributor: Jennifer, Dublin, Ireland

My daughter Shannon was diagnosed with Bilateral Retinoblastoma on August 21st 2008. She was 5 months old. I am a unilateral Retinoblastoma survivor so I already had the awareness and knew the reality of the disease. It doesn’t lessen the feelings of fear and uncertainty, each case is unique in its presentation and response to treatment.  My treatment was immediate enucleation of my left eye. I was 2 years old. Shannon underwent 8 chemotherapy rounds with countless examinations under anaesthetic (EUAs) which included cryotherapy and laser therapy on existing and new tumours until she was 5 years old and deemed stable.

The process starts off quickly, whipping you around from diagnosis to treatment options to examinations under anaesthetic. Your vocabulary expands to include medical terminology; blood counts, portacaths, hickman lines…  It feels like you are sitting on the top of a steep drop, no idea how far down it goes or for how long. It’s dark and you can’t see any signs of slowing down.

You search the internet for the cure you desperately want, then you find the support group…you ask questions, apologising for asking them as you feel silly asking the doctors to explain again but in layman’s terms… The moms are welcoming, supportive and knowledgeable. No question is too silly and no answer goes unchallenged for accuracy.

Jennifer and ShannonAll have their own story, some great outcomes, some left with more challenges to deal with. All are fighting desperately to save their child’s life. They are the ones we bounce off when the rollercoaster takes a dip with a recurrence at EUA, this happens frequently on the retinoblastoma journey as recurrence post chemotherapy treatment is common.

They travel with you in silence until you call out for support. In time, you become the silent but omnipresent RB mom…there to listen and sympathise with the new arrivals to your world…disorientated and still nauseous from the first violent twists and turns of the rollercoaster that is childhood cancer.

I didn’t find the Rb Moms group until after Shannon’s initial treatment had finished, I joined an adult Rb group first and heard of the moms group through them. We share our stories over and over and send positive vibes before every exam or treatment when asked to. Retinoblastoma is still so unknown in the realm of childhood cancer, we all take an active role in spreading awareness.

Life Blurs Past on This Rollercoaster

Contributor: Kristina Rae Jordan, Missouri, USA

When I met my husband, we had the talk that it was possible we could have a child with cancer. He said it was 50% chance. I knew we would get through it even so. Trust me, there is no preparation we could have done for that kind of news.

Life throws curve balls when you least expect it. Life changes when you hit puberty, when you become an adult, when you get married, and have a baby. You learn to embrace it all as it comes. Sometimes change is overwhelming. A lot of times we feel like we won’t make it. I have found belief in God and this has helped me to be strong, given any situation.

In 2012 when our precious girl was born, life would no longer be the same. We were now parents. We brought a life into the world and it was no longer about us. Little did we know what we would face one year later.

2013 was the year our life sort of stopped. One day in February 2013 is burned in my brain. Life didn’t just change, it quit moving. Like I was holding my breath. Doctors advised us to see another doctor out of state, and thus began our journey. The diagnosis of Retinoblastoma was a journey we felt responsible for, at least my husband did. Guilt ran rampant. I didn’t have a choice but to move forward, follow instructions, put my fears/health aside and focus.

There are so many things I am thankful for. It’s all the people I have met through this journey. Meeting other Retinoblastoma Moms has been a blessing because you no longer feel alone. The lasting friendships and non-judgment has been huge. We are fighting the same battle in different ways. It’s easier to get through it knowing you have other women to talk to, cry with, to lend a hand. Change is hard, but it’s so much harder on our kids who fight these battles. They weren’t meant to, and they will not fight alone!

Sharp Turns and Steep Unexpected Drops

Contributor: Lindsey Held, Georgia, USA

On May 18, 2016, I noticed what appeared to be a glare in her eye. Ethan, her father, was taking pictures at her 3rd birthday party and he also noticed a glare in her eye. I called her pediatrician and they said to bring her in right away.  The pediatrician didn’t notice anything, but referred us to an ophthalmologist.

On May 26, 2016, we went for an eye exam. The doctor told me her right eye was “atypical”, but we didn’t know what that meant.  He said we needed to go see a specialist.   The specialist looked at her eyes the next day and told us that we needed to see another doctor.  We still didn’t know what was wrong with her eye. We couldn’t see that doctor until June 1 due to the holiday weekend. Finally we got a diagnosis. Retinoblastoma. CANCER! No words can express how we felt. Our little girl had cancer.  He also found a cyst on her pineal gland.

We started out this journey by considering the easier route…remove the eye. She had one large tumor with severe seeding in her right eye only. However we realized we had to fight. She would need to have chemo twice a month for 6 months along with her eye exams under anesthesia. During those 6 months, not only did she lose her hair, but she also lost her ability to be a normal child.

We were told the cancer was under control and the pineal gland cyst had shrunk. But two months later, the cancer in her eye came back.

Her doctor decided she would need Intra-Arterial Chemotherapy for 4 months. She lost her vision in the eye after the first IAC, and her eye swelled. One month after her last IAC, we were told the cancer was gone…but it came back again.

Her doctor said she would need injections of chemotherapy directly into her eye. Each time we went back for an injection, we were told there were only a few seeds. And then, we were told there were too many seeds to count.

The doctor could no longer control the spread of the cancer to other parts of her body. If it spread to her brain via the optic nerve, her life would be at greater risk. We had lost her vision, and now it was time to lose her eye before she lost her life.

But we tried, and we have told her how we tried everything we could to save her eye.

Sunlight and Beauty When the Rollercoaster Slows

Contributor: Natasha Marquis Connealy, Omaha, Nebraska, USA

Retinoblastoma; like riding through a dark tunnel on a rollercoaster, venturing into the journey was intimidating and foreign. We experienced the first terrifyingly unexpected drop with the diagnosis, followed quickly by our treatment plan. Not to be lulled into complacency, the nerve-wracking bumps of testing and waiting continued, until we reached the sunlight – confirmation of a curative enucleation.

With the cancer being out of our child, we were back in the light. In this light, we can view the beauty of life at the peaks. But reminders of the fear of the cancer in the dark tunnel arise with even the slightest drop of the rollercoaster’s path.

Finding a community who have faced this fear and are at various stages of dark tunnels and rides in the sunlight offers an assurance that we are not alone. The rollercoaster is full of people and families from a variety of backgrounds and across the globe.  All experiencing our own versions of fears and anxiety – mixed with strength and love… and maybe most importantly, hope.  This reality holds us all in like a seatbelt.

Natasha and her family

About the Author

Lori Baños lives in Iowa with her husband, Juan. She doesn’t like rollercoasters and is afraid of heights. She has two children and three step-children. Her daughter, Sena, is a 16 year bilateral Rb survivor. On October 24, 2010, Lori created the Facebook group, Rb Moms, for mothers of children with Retinoblastoma.  The group currently has over 1,280 members.

Lori and her daughter, Sena.