Eye Fight to Win-Retinoblastoma Awareness

Retinoblastoma. This was nothing more than a Google search result I stumbled upon while doing some “overly anxious mom” internet research on infant eye issues. Now, it has become something I know more about than I ever wanted.

There are usually 250-300 cases of Retinoblastoma each year in the United States, making it a “rare” form of childhood cancer. It accounts for about 3% of all childhood cancers. Sort of sheds a light on how extremely prevalent childhood cancer actually is when you see that statistic that says Retinoblastoma accounts for only 3% of all childhood cancers and I have developed a friendship with FOUR mothers whose child has this diagnosis. In just one month. Wow. Childhood cancer is real, folks. More real than we’d ever like to imagine.

Retinoblastoma is a rare cancer of the retina, the thin membrane on the inside back of the eye that is stimulated by light. Retinoblastoma is usually diagnosed before age 3.

Retinoblastoma can be hereditary (passed down in families) or non-hereditary.

  • Forty percent of retinoblastoma patients have a genetic defect that leads to multiple tumors in one eye or both eyes. This is known as hereditary or germline retinoblastoma. These patients are typically diagnosed before 1 year of age.
  • Patients with hereditary retinoblastoma may pass this disease to their children.
  • Throughout their lives, patients with hereditary retinoblastoma are more likely to develop other cancers inside and outside of their eyes.
  • Sixty percent of patients have the nonhereditary form of retinoblastoma. Each of these patients develops a tumor in only one eye. Nonhereditary patients are diagnosed on average around 2 years of age.

Untreated, retinoblastoma can spread widely:

  • Throughout the retina
  • Throughout the fluid inside the eye (also called the vitreous). Large tumors may detach from the retina and break into smaller tumors, called vitreous seeds. Floating in the vitreous, these seeds are very difficult to treat.
  • Into the tissue under the retina
  • Into the eye socket, optic nerve and brain
  • To the bones and the bone marrow

So there are some facts on Retinoblastoma. And here’s where I want you to pay attention. I don’t share this to scare you, but to inform you:

One of the easiest ways to check your child for possible Retinoblastoma is to take a flash photograph of them in a darkened room. The eyes should reflect red. The super annoying red-eye that we all try so hard to avoid, especially before better cameras came along, is now something you absolutely want to see when checking for this cancer.

So, if a normal eye reflects red, what would an eye that is affected by Retinoblastoma look like? More than likely, the eye would reflect back white, or have a sort of “glow” that isn’t red, much like a cat’s eyes glow in the dark.

RB Eye

On light colored eyes, the red reflex is really easy to see. On darker eyes, sometimes there is no reflection at all. There’s a big difference between no light reflection and a white/glowing reflection. Take multiple photos from different angles.

If you start taking all these flash photos of your children and they don’t look 100% normal to you….take them to your pediatrician and ask for a red eye reflex exam, and/or for a referral to an Ophthalmologist. BEST case scenario you’re sent home and feel like an overly concerned hypochondriac! No biggie.

RB EyeWhat is a big deal is the timing of this cancer. When caught early and with tumor growth restricted to the eye(s) it is so much easier to treat. The longer it takes for cancer to be diagnosed, the longer it has to spread throughout the body. As Mom and Dad,  you are the voice and advocate for your child, especially when they’re too young to tell you if they’re feeling any discomfort or if their vision is blurry. Go with your instinct. If you’re questioning something, anything, get it checked out. I always thought “Oh my goodness I am overreacting. I don’t need to even be thinking about these things. Cancer won’t happen to my kids.”

RB Eye 2

In hindsight, I wish we had taken more flash photos of Willa’s eyes before her right eye was removed. It’s not a fun thing to document though, and I still get a sick feeling when I see her little eye reflecting white. It’s much easier to post photos of children I don’t know.

IMG_4378

 

 

Here’s a photo of Finn that we took with the flash on. Nothing reflected back, almost no matter how many times we took a photo of him. He has extremely dark brown eyes. This worried me, I wasn’t sure what that meant…and honestly, I worried up until the point Dr. Wilson examined him and said his eyes were perfect. So….no reflection at all isn’t necessarily an indicator of an issue. White or glowing might be. Johnnie’s eyes are much lighter and they reflected back bright red every time.

So set your flash setting to “ON” and snap some photos. You will see two huge red circles smiling back at you and you won’t have to give it another thought. Put the “I’m just being a worried mother” thoughts out of your head and just do it! ….Grandmas: take flash photos of your grandchildren and check their eyes out, please!

This is a really neat article from the UK about how a toddler’s life was saved because a friend had come across a photo of her on Facebook where one of her pupils looked white. We all know social media has made us all stalkers to one degree or another….so when you peruse photo after photo on Instagram and Facebook, if you see something that looks anything like some of these photos I’ve posted, say something. End rant!

And thank the Lord Almighty that we are blessed enough to have a Pediatrician (cough, cough, Dr. Gill, First Choice Pediatrics) who did not waste a minute referring us to the Ophthalmologist.  Who has made multiple house visits to check out our children. Who answers countless texts and phone calls about all sorts of health concerns. Who came over to our own home to initially give us Willa’s diagnosis so that we didn’t have to hear it from a stranger in an unfamiliar office. Who has always been such a comfort and support. Who is extremely passionate about helping kids stay healthy. Who has been like a second father to my husband. Who has never ever made me feel silly when my eyes start to well up with tears during well-checks for my babies. Who loves and cares so deeply. Thank you, Dr. Gill, will all that we have, thank you.

…Oh and “EYE FIGHT TO WIN!!!!” -Willa Bea

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