It’s no exaggeration that I owe all of this strength and courage to my daughter, Joli. And, I certainly owe her all of the blogging and public sharing. In 2003, we started a family blog to stay in touch with our relatives all over the country when Joli was born. Soon after, our family blog turned into her retinoblastoma blog.
Once Joli began to peek out of the curtain of active treatment, I worked with some of my Retinoblastoma Moms and put together an online resource called “Retinoblastoma New England”. Through that site, we’ve heard from dozens of families who were newly diagnosed and thankful that we put together information that was positive, uplifting, and optimistic. Because Rb is so rare, it was hard for us to find resources that discussed the wonderful ways in which retinoblastoma has affected lives. So, together, we wanted to celebrate the gift of retinoblastoma — we wanted to take a run on the wild side.
At least once a year, Donna Castagna and I organize a trip for our survivor kids to get together. It’s an amazing experience for them to be surrounded by other kids who have “special eyes”, prosthetics, or visual challenges. They just light up when they are around one another — even if just for a few hours a year!
Because I had already been blogging about Joli’s life, treatment, and cancer survival, it was easy for me to write about this Marathon B4 Mastectomy. There was one key difference, though: I was going to write Mb4M honestly. One thing I learned from Joli’s journey is that it was emotionally draining to always want to soothe other people. Whenever people asked about Jo and treatment, our answer was always, “She’s doing fantastic!” And, while that positive outlook certainly was important, it wasn’t always real. There were days that were horrific. There were weeks when we were terrified. And, I never felt like I could write or talk about that unless we were with other retinoblastoma families who knew I was just trying to cover up my feelings.
While Mb4M was sometimes tough to read (and to write!), I committed to being my most authentic self that I could. And, when I couldn’t, I was sure to call it out in a following post.
Raising awareness and taking action have always been at the core of both Retinoblastoma New England and Marathon B4 Mastectomy. So, it brought me great joy to see that the day time soap opera “Days of Our Lives” began a story line, yesterday, about retinoblastoma. Back in 2001, one of the actors — Matthew Ashford — joined the retinoblastoma world when his daughter was diagnosed with the cancer. For years following, Retinoblastoma International partnered with Days of Our Lives Charity to raise awareness and funds. I’m so pleased they haven’t given up the fight.
On Tuesday, December 14, 2010, a storyline was introduced with one of the infants on “Days of Our Lives” with the notice of a “white glow in the baby’s eyes in these pictures.” Given that this is a highly watched show, retinoblastoma awareness is going to get some major attention!
Imagine the hundreds of lives that could be saved each year just by introducing this storyline?
While retinoblastoma, in the United States, is treatable if caught early, we have also heard of children who were diagnosed much too late. If caught late, the cancer cells quickly spread from the eye to the optic nerve to the brain. We were lucky — Joli’s cancer cells were just at the base of her optic nerve (having already destroyed her eye). I refuse to imagine what would have happened in another month’s time…
So, let’s encourage Days of Our Lives to keep it going, shall we? Join me in leaving a comment at the bottom of the Days of Our Lives episode page (12/14/2010) about why this retinoblastoma story line is so important! The synopsis is here:
Gabi and Will hover as Rafe studies the photos of Johnny. He acknowledges that Johnny’s pupil in his left eye is white, but thinks it’s nothing serious. They decide to reprint the photos, but later realize Johnny’s eye is still white. He assures Will and Gabi that it’s probably a reflection of the light, even though it’s in every photo. He tells Will not to tell Sami so as not to worry her over nothing. Will agrees. Later, Rafe wants EJ to see the photos, but EJ refuses and kicks Rafe out of his house. Rafe is about to call Lexie when she appears on his doorstep. He tells her he needs to talk to her about something important.
Encourage this storyline, and join me in raising awareness so that infants and kids can have the promise of sight for all the days of their lives…
Peace, love, and some good day time drama,