We are a group of parents from the midwest who have children with retinoblastoma and/or are survivors of retinoblastoma. Our hope is to promote awareness and provide support to families. This site was developed with guidance from Retinoblastoma New England (www.rbne.org) as many of us have realized the importance of parents, children and siblings affected by retinoblastoma meeting others who share similar experiences. Many of us originally met online and then later in person at Camp Sunshine (www.campsunshine.org). We also know it’s difficult to meet other families when many times you are the only one being treated for retinoblastoma at your hospital. Please check our site frequently as I will update links and resources as often as possible with current information. We’re glad you found us!
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1 response so far ↓
Paula Wheeler // December 29, 2009 at 8:25 pm |
Hi,
I am the mother of a 19-year-old survivor of bilaterial retinoblastoma. My son was diagnosed at the age of 15 months in 1991. His right eye was eneucleated and he received radiation treatment for his left eye (no chemo), which was the common treatment at that time. He is our only child. We were living in Baltimore at the time, so he was treated at the Wilmer Eye Institute/Johns Hopkins. We now live in Clive, IA and he is in his second year of college at St. Olaf in MN.
My husband and I have walked in your shoes and I feel blessed to be able to tell you that there is light at the end of the tunnel you are now traveling down. I would be happy to share my experiences and ‘wisdom’ with you!
Happy New Year,
Paula