Whilst retinoblastoma has affected her life, Monica has not let the disease hold her back from success or from chasing her dreams. Now age 30, she recalls her story:
Many experts agree that most teenagers and adults are unable to recall memories before they were four or five years old. Not me. I have very distinct memories from my earliest years. I remember walking through a hospital corridor dressed in a surgical gown with treaded socks on my feet and holding hands with nurses as they escorted me to the operating room. I remember laying on the operating table, a pulse monitor on my finger and an anaesthesia mask on my face. I remember waking up in a dark room in my mother’s arms, the gentle sway of a rocking chair, and her soft singing as I woke up from surgery. I remember eye patches, contact lenses, stinging eye drops, and painful bright lights. I remember being barely two years old and being treated for cancer.
In April 1992, two months shy of my second birthday, I was diagnosed with bilateral retinoblastoma at Mayo Clinic in Rochester, Minnesota, United States. My parents were devastated, but I can’t say that they were surprised. Around five years old, my mother had been diagnosed with retinoblastoma and lost her left eye to treatment. She and my father knew there was a risk that their children would have a similar fate after seeking advice from a genetic counsellor. To their great relief, my two older sisters beat the odds. I did not, but it wasn’t immediately obvious.
My grandmother often tells me the story of how my condition was discovered. She was taking care of me for the day while my parents were working. Supposedly, I had started holding my hand over the right side of my face, saying “eye hurt” over and over. My grandmother called my mother and they immediately rushed me to the nearest eye doctor in a town over thirty miles away. When the doctor examined me, he saw a tumour in my right eye. Soon after that, I was taken to Mayo Clinic – where my mother had been treated – and my parents learned that the cancer was also in my other eye.
Six years later in November 1998, my little brother was born. Bracing for the worst, my parents took him in for an eye exam at Mayo Clinic as soon as they were able. At six weeks old, my brother was diagnosed with bilateral retinoblastoma. Instead of hoping that one child would survive, they were praying for two. All while raising two other children who didn’t understand the situation and trying to keep a farm that was six hours away from the hospital.
My brother and I made it through our ordeals. Our doctor managed to save our eyes, but not all of our vision. Corrected with glasses, my vision is 20/40 in my left eye and “count fingers” in my right eye. My brother’s vision is similar. I can’t tell you what it is exactly – he refuses to talk about it.
Poor vision isn’t the only consequence of surviving retinoblastoma. Chronic pain plagues me. My eyes don’t produce tears properly. Headaches frequent me because my sinus cavities are too small, and so is my mouth. Already, I’ve lost count of the number of times today that the joints in my jaw have popped because they don’t align.
Because I had the hereditary form of retinoblastoma, I’m at risk for developing other cancers in my lifetime. Living with retinoblastoma and the fallout from treatment has also been very difficult mentally and emotionally. I was bullied at school by people who didn’t understand, teachers struggled to accommodate my vision needs so that I could keep pace with my peers. In spite of all this, I have had a great life.
Now aged 30, I graduated a degree in Biochemistry & Molecular Biology and began my professional career as an Analytical Chemist in pharmaceutical research and development.
While employed full-time, I earned a Master of Science in Forensic Science with a concentration in Biochemistry. As it turned out, my life path did not lead to a job in forensics.
For the last four years, I have been the Lab Supervisor for a company that manages plant and soil health for the agricultural industry and water quality for public health. In 2019, I made the decision to pursue a second Masters degree and am now a couple of credit hours shy of completing a program in Occupational Safety & Health and Environmental Management.
By participating in the program, I have found a passion for the environment which led to my decision to apply to a doctoral program in management specialising in executive leadership. I will begin this program in September and hope to use this education to make positive contributions to global climate crisis actions. In addition to my responsibilities as a lab supervisor, I am currently the Chairman of our company’s Safety Committee and have started putting together a plan to improve our waste management practices through better recycling and environmental stewardship. In my free time, I enjoy tending to my houseplants, spoiling my cats, writing, voice acting, and volunteering.
The most important lesson that my parents have ever taught me is that my cancer does not define me nor is it an excuse to not try. Physical needs aside, I have not let my retinoblastoma limit me. Here I am living independently and chasing my dreams.
I want to show others that their life or their child’s life is not over because of retinoblastoma. I remember my mother’s tears – tears because she had always blamed herself for passing on the Rb gene to her children. She’s been gone for almost ten years. I’ve lost my chance to turn her tears from sadness to joy. But if there is one mother out there who I can comfort or who will find hope from my experience, I’d jump at the opportunity to share it.
Some of the issues Monica describes are late effects of treatment received as a child, many of which are very different to modern treatments.
If you’ve been affected by retinoblastoma and want more information on late effects, please visit our adults after Rb page. Our support workers Lesley and Sarah are also here to help. You call us on 020 7377 5578 or email them directly:
- Lesley Geen (The Royal London Hospital): lesley.geen@chect.org.uk
- Sarah Turley (Birmingham Children’s Hospital): sarah.turley@chect.org.uk