Enucleation, Life and Support: A Parent and Survivor Perspective
Monday July 6, 2020
When a child has retinoblastoma, removing the affected eye remains the most common treatment worldwide to save life. Support is vital throughout treatment and long after. Lori and Grace Padilla share the perspective of a parent and a young adult survivor, their thoughts on enucleation, and the benefits of in-person support groups.
We all know the words “your child has cancer.” Some of us have a predisposition to know what is being said, others only hear retino….., what? Retinoblastoma. Predisposition or not, no one wants to hear those words associated with their child.
You find your mind racing, wondering how this will turn out. You listen to options presented to you, do your own research and try to remember that no matter what you initially agree to, you do so with your child’s best interest in mind.
Diagnosis and Treatment
Our daughter, Grace, was diagnosed at 2 years 2 months old with retinoblastoma, unilateral multifocal (more than 1 tumor in one eye).
After much discussion and deliberation, enucleation was decided. The internal conflict of making the decision to remove a part of someone’s body without them being able to give their consent, was grueling. What would our daughter think of us for making that decision without first trying to save her eye? Knowing her gaze will never be symmetrical, how will she feel about how she looks? But we wanted to get that growing monster out of her body.
Of course, removing her eye did not mean everything is over. It just meant the cancer was gone, hopefully for good.
We raised Grace with the word cancer as part of her life. In 2000, genetic testing was not as common as it is today after enucleation, and we didn’t know we should have asked for it. Her cancer was multifocal, which meant she might have the germline mutation. But it also could mean that a part of her original tumor had broken away to form large seeds, which isn’t considered a true multifocal.
In 2018 Grace had genetic testing done and she does carry the germline mutation. Early on we taught her that retinoblastoma was the hand dealt to her in life, and let her know that it didn’t define who she is; instead it is just a part of her. Grace was accepting of it and never let it slow her down. She has a vibrant personality and doesn’t mind sharing her story with anyone who might ask.
Finding Support for Grace
As Grace got older, she started having questions about living with a prosthetic eye that she felt we couldn’t understand. Such as how it feels to have a prosthetic eye, both physically and emotionally, how to pose for a picture that lessens the look that her eyes are somewhat different, how to build the courage to remove and reinsert her eye on her own. One question that we could answer for her was “how do people with two eyes know which chair to sit on?” When questioning her for clarification, she explained that she thought people with two eyes saw two of everything!
Grace had never met another person with a prosthetic eye. We felt she would benefit from meeting and talking with others – kids and adults, who walked her same path. Seeking this out proved more difficult than we anticipated, but we found the group Retinoblastoma of Arizona (RBAZ) that was founded by a mom, Colleen Crowley. Her son had similar questions to Grace following his treatment. We contacted Colleen and she invited us to their next event which was held at a pizza parlor specializing in games for kids of all ages.
At that time, when Grace met people, she felt they noticed her one eye was a prosthetic. As much as we tried to assure her that a few people might notice, but the majority wouldn’t, it was still a concern for her. She knew we were trying to comfort her, but really didn’t know what she was feeling.
So off to Arizona we went to meet with RBAZ. Knowing there was going to be a blend of RB enucleated kids and their siblings, we asked Grace to try to notice which kids had a prosthetic eye. Much to Grace’s surprise, it was very difficult for her to tell. For as little an event as that sounds, it gave her the confidence she needed when meeting new people.
Several RBAZ families attending a 5 day camp in Sedona AZ. Young survivors wear aqua colored logo shirts, and family members wear purple.
A Second Family at Retinoblastoma of Arizona
As time went by, circumstances moved our family to Arizona. We became very involved with RBAZ. Many of the same families attend the quarterly events, and our kids got to know each other and grow up together. Families often interacted outside of these events. RBAZ has both adult and kid survivors, which gives retinoblastoma affected kids and their parents a chance to co-mingle and learn from each other. We ate and played together and became a retinoblastoma family.
Grace has a younger sister, Audrey, who also benefited by meeting siblings of diagnosed kids, for they too need to share their experiences and find their place in this retinoblastoma world. The value for all of these kids who share a common denominator is priceless.
Fast forward a couple years after we arrived in Arizona, Colleen and her family moved to Ohio. Knowing the benefit of in-person meetings for these families, I along with a couple other RB Moms, took over the role of running RBAZ. Since then, the organization has grown tremendously. Families come and go, kids grow up and move on in their lives; many have let us know how valuable RBAZ has been to their journey – both the kids and their parents.
For myself, it was extremely rewarding to be on the Board of RBAZ for 10 years. I recently stepped down, but RBAZ still exists today with 3 RB moms at the helm.
Finding and Building Support
I highly encourage you as parent(s), along with your retinoblastoma diagnosed kid(s) and their sibling(s), to seek out other families who are walking the same course as your family. Be it through a local organization or in a camp setting like Retinoblastoma Week at Camp Sunshine. Meeting adult retinoblastoma survivors, kids meeting kids, sharing stories and ideas at an in-person setting, will bring everyone involved so much joy and value.
Don’t have an organization close to you? Reach out to an on-line retinoblastoma group and ask who lives close enough to get-together. That is how RBAZ started in February 2001, a few families meeting in McDonald’s. Small steps can lead to big strides.
Grace graduated in May 2020 with her Bachelor of Science in Neuroscience, and she will be pursuing her PhD in Neuroscience at UC San Diego this fall. Audrey is a senior attending the University of Tampa in Florida, and will graduate in May 2021 with her Bachelor of Science in Psychology. Mitch and I are still living in Arizona.
Grace, Mitch, Lori and Audrey, and their dogs Elvis and Ella.
My name is Grace Padilla and I am a twenty-one year old cancer survivor. When I was two years old, I was diagnosed with unilateral multifocal retinoblastoma in my left eye, and had that eye enucleated. Today, I want to tell you about my experiences living with a prosthetic, the value of having a support system, and that having an enucleation can be the right decision, as it was for me.
I cannot stress enough how individual these types of experiences are for cancer survivors, and that my feelings may be completely different from another survivor. I respect and honor that we see our cancer journeys differently, but I hope I am able to hit some general points that retinoblastoma survivors who had enucleation can all unite in.
I decided to break down the experience of living with a prosthetic into two categories: mental health and physical health. I want to keep these categories rather large and fuzzy because survivors have such a broad range of experiences dependent on SO many external and internal factors. First, let’s talk about physical health…
Caring for the Prosthetic
You know how every six months you are supposed to go to the dentist? Well, I think prosthetic eye maintenance is parallel to dentistry. Every six months you need to go in and get a polish, and make sure everything is good with the prosthetic (teeth) and the socket (gums). And every now and then you need to do a little maintenance, like adjust the prosthesis so your eyelid doesn’t droop, or you need to get a new eye – I’ll put this into the broad category of dental work.
This is not the most pleasant experience, but it definitely isn’t the worst either. I think the attitude we adopt towards prosthetic eye maintenance really shapes how we view it, and how our body handles it. So if I had to give advice to parents, please, recognize that this is not fun for us to go through, but it’s not the end of the world either, and we are fine. And to survivors, just think about the dentist: I don’t like going to the dentist, but I would rather go and have nice teeth then get a cavity from negligence.
Caring for the Seeing Eye
There is something else I want to talk about in regards to physical health, and it has everything to do with the seeing eye. I am aware that I am now talking to a smaller sect of people with enucleations, but I feel this embodies a lot of what life is like living with a prosthetic.
We only have one seeing eye left. Of course I don’t have to tell you that, I mainly state the obvious because I know we have all heard that phrase hundreds, if not thousands, of times. Sometimes the eye you have remaining isn’t ideal either, be that because of treatments, an accident, or genetics.
I recently went to the doctor for a vision checkup. I’m about to move to San Diego to start graduate school, and the doctor proceeded to tell me a list of doctors I need to establish relationships with: an ophthalmologist, optometrist, ocularist, and retinal specialist. Four doctors for my eyes, which for some isn’t a lot, but for others is four more than they ever thought of having. And those are just for maintenance, I don’t have to delve into all the other doctors retinoblastoma survivors have had and need.
Grace, aged 13, with the family’s beloved dog, Bailey, who also had one eye surgically removed.
Growing Self Awareness
We are told to start wearing protective glasses as young as 18 months old, and that we shouldn’t do anything that could lead to damage in the eye – unless of course we are wearing our glasses. But, who wants to go boxing while wearing glasses? Or sprint across a soccer field and have to keep pushing your glasses up your nose because you’re sweating? It’s inherently frustrating. And doctors often don’t approve of contact lenses because, again, we only have one eye left.
I always felt self-conscious about wearing glasses – I especially did when I hit puberty. Like all kids, we start to recognize and exacerbate our imperfections, and I think that’s when having a prosthetic eye becomes really difficult. On top of raging hormones, it feels like every time you look in the mirror, you see your prosthetic.
On a good day, you look at the prosthetic and think “ok, no one can tell”, but then you shift your gaze and are immediately drawn to the lack of movement that happens in the prosthetic. Or you’ll look at a photograph and realize that if you angle your head in a specific way for photos, it makes the prosthetic more or less obvious.
The hardest part about having a prosthetic eye is feeling like you look different; at least it’s the hardest part for a long time. At 21, I would say that I still look in the mirror every day and see my prosthetic. But logically, I realize that we as humans always magnify our imperfections; my friends and family love me, and like all humans, I am beautiful.
RBAZ organized a Jeep tour of the Sedona countryside during one of the popular 5 day camps.
The Power of Community
Another difficult part about having a prosthetic eye is feeling alone. At such a young age, we don’t really know anyone who has prosthetic eyes – I still only know people with prosthetics as fellow retinoblastoma survivors. And many of those connections stemmed from family support groups that we became involved in when I was really young.
When my family moved to Arizona, we became part of Retinoblastoma of Arizona (RBAZ). This organization does so much for the RB community, but as a child, the most valuable aspect of the group was meeting kids of my age who were like me. At the first gathering we attended, I was seven and I thought everyone would notice my prosthetic eye. So my mom told me to look for prosthetic eyes in the kids. I found that I had a really difficult time telling if other kids had prosthetics, and that really gave me a lot of confidence.
A few of those kids together maintained relationships into high school. It was invaluable having someone to talk to about being a cancer survivor, someone who understood because they went through almost the exact same treatment.
My family and I attended Camp Sunshine Retinoblastoma Week in Maine for two years. I was 11 at the time and was beginning to feel really self-conscious of my eye, and afraid because I didn’t know how to take it out. While we were there, a girl who was my age and I met with a young woman who took out her eye for us, and that opened up a sense of comfort for me with my prosthesis. I realized that day I could be beautiful and still have a prosthetic eye.
These groups and camps dedicated to the retinoblastoma community really shifted how I view having a prosthetic eye. Last year, I was part of a cancer survivor email chain. One of the people in the email had retinoblastoma when she was younger so I decided to reach out and introduce myself more personally. I learned that I was the only other RB survivor she had ever met, and the only other person she knew who also had a prosthetic eye. I immediately felt so sad because I don’t know what I would have done without the retinoblastoma support network I have grown up with.
Living with a prosthetic eye isn’t easy. There are challenges that people don’t expect, or that they do expect, but you defy. A lot of people thought I wouldn’t be able to drive, but I can. Granted, issues with depth perception seem to invade my life in really unexpected ways, but I can do most anything I want. And seeing other RB kids grow up and do amazing things is so inspiring.
I am really thankful I had an enucleation, I think my parents made the right decision for me because I’m here today, I am able to live an amazing life, and I will be 20 years cancer free this year.
Life is a positive adventure for this retinoblastoma survivor.