May 11-17 is Retinoblastoma Awareness Week
I am writing this post in honor of my parents and for other people whose lives are/were affected by retinoblastoma.
While very few people would describe my life (or me) as “normal,” my clicking away at the keyboard here today offers incontrovertible proof that children with retinoblastoma can and will lead long, good, interesting, and kookie lives not the dullest feature of which is having a fake eye that can be used to advantage on the playground, for show-and-tell, and for freaking out substitute teachers.
In August of 1973 my father was a medical resident in training to become a neurologist. I was six months old. One morning he was in the basement of our house watching me while studying for some medical exam. At one point, he happened to look up from his book as I happened to be crawling through a patch of sunlight that happened to be shining through the window at such an angle that it caused a startling reflection in my left eye.
My right eye appeared normal. My left eye reflected the light like a cat’s eye. A moment later, as I finished crawling through the light, the reflection was gone. Alarmed by what he had seen, my dad picked me up and held me to the light again, trying to recapture that glow.
He took me to the hospital and explained what he had seen. A day later I was examined by a specialist who determined that the white light reflex, (a.k.a. leukocoria (http://en.wikipedia.org/wiki/Leukocoria), was caused by a cancerous tumor. Within a week my eye was removed. A few weeks after that I was fitted with a prosthetic eye. After I reached my third birthday without developing cancer in my other eye, I was deemed “cured.”
This a story I have known for as long as I have known my name. It was a part of my growing up and it was as normal for me to be able to take out my eye as it was for me to be able to tie my shoes. My cancer story was a part (and basically a good part) of who I was. It was only after I got older and had children myself that began to appreciate what had actually happened to me and to my parents.
Thinking on it now, I see that it really was an amazing story.
For one, it transformed my dad, who is a skeptic by nature, into a believer. “Molly,” he tells me, “It was like the hand of God was on my shoulder that morning.” And I believe him. Only the hand of God (or perhaps a nuclear explosion nearby) could prompt my dad to look up from a book while he is reading.
Also, I have repeated that story about how I crawled through that patch of sunlight so many times without properly appreciating, Hold on, wait a minute. I was crawling at six months? I was so advanced! My own kids were hardly sitting upright at that age!
But more than anything, now that I am a parent, I have a new appreciation for what my parents went through during that long wait before my third birthday. From the time of my diagnosis until I turned three, my parents had to take me to the hospital every three months where I was put under anesthesia to have my remaining eye examined. I was there, obviously, but I definitely did not live through it the way my parents did. For me, it was an unpleasant, but not harrowing, experience. While I remember not liking anesthesia and I remember not liking being rolled away from my parents, these memories are no stronger than the more positive ones, like how right before my very last check up, I got a purse in the shape of a birdhouse.
I can only imagine what my parents when through.
I got a taste of this when I had to have my own children screened for the disease, a process that required more than a dozen examinations, each of which required the administration of painful eye drops and several of which required brief sedation under anesthesia.
During these exams I would sit in the waiting room amongst parents who were dealing with an actual cancer diagnosis. Seeing them my heart broke, for them and for my own parents in retrospect. I remember one mom, in particular, whose young daughter, had been diagnosed. I don’t remember what prompted the mom to say it exactly, but at one point she looked at me and then at her daughter and said, wistfully, “After all she’s been through…”
And I remember thinking, after all she’s been through? You, the mom, are the one who is really suffering right now.
I don’t mean to minimize what the child had experienced, or what pain was to come, but at that moment the daughter seemed fine. She was cute, and bubbly, and tolerating the “no food or liquids before anesthesia” rule very well. It was the mom, I know, who felt like she had to throw up.
No cancer diagnosis is good news, but when retinoblastoma is caught early it is a very manageable disease. Generally, eyesight is preserved and basically everybody survives it. (This generalization comes with a big asterisk, however, which I would be happy to explain in regular people terms if anyone is interested.)
The Dr. who screened my children for the disease and who works at the cancer hospital Sloane-Kettering in New York City shared some good advice. During one of our early appointments, when I was still reeling from the idea that my children could develop retinoblastoma, he told me not to worry.
Pointedly, he did not say, “Don’t worry because your kids won’t have cancer.” He said, “Don’t worry because your kids will be able to handle it if they do.”
Of course it is impossible not to worry but that doctor was right. I want you all to be aware of that.