Some of the best advice many of us received when our children were first diagnosed was “Stop reading the internet!” When we first found out about retinoblastoma, many of us conducted internet searches about the cancer – only to be completely horrified, scared, and depressed. While many stories about retinoblastoma are difficult, we are here to tell positive stories and have you meet our positively wonderful children.
Caring for a child with cancer is not easy. It’s very difficult. It’s emotional. It can be scary. And, even long after diagnosis, many of us are still finding effective ways to parent our children to grow into confident, strong young people. But, when our kids were first diagnosed, we ONLY heard horror stories — we rarely heard positive stories.
So, this site serves as a place where you can find hope, where you can find encouragement, and where you can find someone who understands you and your struggle.
Retinoblatoma New England is a support network of families who have children with retinoblastoma. Inspired by the work of Retinoblastoma Arizona (RbAZ), we believed in the value of meeting other families in the region who are experiencing the challenges and blessings of having children diagnosed with cancer.
Many of us met online through a network of parents, and then many of us met in person at Camp Sunshine. We can all attest to the importance of our children meeting each other – some of our children have retained both of their eyes, many of our children have 1 “special eye” (prosthesis), and a few of our children have 2 special eyes (completely blind).
Here, we tell our very personal stories with retinoblastoma. And, we hope this site serves as a personal resource for you.
Disclaimer: This Retinoblastoma New England site is NOT a medical nor diagnostic site. You must see your doctor in order to receive a diagnosis. Rather, this site is a place where families who have already been diagnosed with Rb can find companionship, comfort, and someone who understands them. Please, see your doctor immediately if you think your child is showing signs of Rb. It’s always better to be safe and careful….
