Before April of 2017, I had never heard of Retinoblastoma. I first read the word in an internet search late one night. Up until that evening, I had a strict policy about googling health related questions. The policy was simple, just don't do it. But there I was, sitting in the dark, our infant daughter sleeping soundly next to me, my phone softly illuminating our living room, and my world crashed as the words childhood eye cancer popped up on my screen.
Earlier that day, I had been sitting with Lucy in our favorite spot on the couch, she was resting on my knees, giggling as we played This Little Piggy, and I saw a glint in her eye. I wasn't even sure of what I had seen, and that uncertainty led me to a late night internet search. In the span of a few hour, I went from playing This Little Piggy with our 8 week old daughter to hoping that odd glint in her eye was cataracts and not cancer.
There’s an entire story in between that moment and now. Two years of treatments, setbacks, triumphs and miracles. It's a story that is still unfolding. But the purpose of this post is not to tell that story. That story, I am sure, will eventually find it's way to the blog in more detail. Today is not about the journey after diagnosis. Today's post is about making sure that more people know about retinoblastoma BEFORE they are googling strange symptoms at 2am. I am posting in hopes that one person will read it, that person will tell someone, who will tell someone, and hopefully, this post will help save a life. YOU can save a life.
The thing about retinoblastoma is that it is most often found by a child's mother or caregiver. The campaign #knowtheglow focuses on early detection. The glow is seen in a child’s eye when flash photography is used. We didn't actually see "the glow", but that again, is a story for another day, a story of how we truly think our daughter is a miracle. So if you ever, EVER see a child's pupil glowing white in a photograph, say something. It might feel odd to reach out, maybe feel like you are overstepping your bounds, but retinoblastoma is a fast moving cancer and the key to saving lives, eyes and vision (in that order), is early detection.
I fiercely love a retinoblastoma warrior with all my heart. I wish just as fiercely, that no other parent has to watch their child endure as much as Lucy has. Will you help me spread the word? Tell a friend and tell that friend to tell a friend and so on. Soon, I hope that every parent will know about RB. Every parent will schedule eye exams and take an extra glance at the photos they take of their children. When more parents know - lives, eyes, and vision will be saved.
This is Lucy, our miracle baby, at age of diagnosis and today. She is a light to all who meet her. Thank you for helping to spread the word about Retinoblastoma.
xoxo,
J
