I joined a support group for stillbirth back when we lost Raime in 2001, and I know how much it helped. We were in a NICU one when Elora was alive. But for some reason, I never really looked into it when Ryan was diagnosed with retinoblastoma.
With the recurrence of his cancer just recently, I stumbled upon a RB moms group on Facebook and it’s been so enlightening! I’ve consulted Doctor Google a lot since the beginning, but it’s been really cool to read the stories of other families affected by this particular cancer. I have really been enjoying talking to the other moms about the different treatments, side effects, and how it affects our kids and the rest of the family. I love seeing the ones that are years beyond needing treatments, and how wonderful they’re doing.
From the group on Facebook of moms from all over the world, I have also found a sub-group that consists only of those who receive their treatment in Philly like Ryan- from Dr. Leahey at CHoP and Dr. Shields at Wills Eye. Talk about people knowing exactly what we’re going through!
However, I am kicking myself for not joining these groups so much earlier, especially when I read a conversation about having subsequent kids. We had genetic testing done when Ryan was first diagnosed, and through that we learned that his chances of passing it on to his children are very high. From what I’m reading, they prefer to have you deliver up to 4 weeks early because tumors form in utero (although that’s not an issue since Bacon came at 32 weeks).
Because Aaron always takes Ryan to his appointments because of the way the military insurance covers him, I don’t think his doctors ever knew I was pregnant and had another baby. I always assumed it was a freak thing that happened to Ryan.