• Retinoblastoma

    Asked by celticgirl68 on Monday, April 29, 2013


    I was wondering why this website wouldn't have any knowledge on Retinoblastoma. My granddaughter just turned 1 yrs. old, on March 7th, 2013. When she was 10mos. old. she was diagnosed with bilateral Retinoblastoma. It was very advanced by the time her Dr. found it. I read up on this cancer as much as I could. I listened to everything that her Dr. had to say, but it's still so surreal.. Along with the chemotherapy, Lili has to have laser surgery right before her round of chemo. Her Mommy, whom is my daughter tries to keep everything together. Along with Lili, she has her son who's 2 yrs. old. I'm trying to stay strong for my daughter and my grand-babies. It's very hard, especially when I don't have anyone to confide with. Our little family, along with my youngest daughter is all we have. My extended family doesn't seem to care. So there's no reason to keep trying to reach out to empty arms.. Thank you for allowing me to get this off of my chest.

    3 Answers from the Community

    • bbay65's Avatar

      So sorry to hear what you and your family are going through. Cancer is tough enough on an adult. Almost unbearable to think of one of my kids afflicted. Maybe now that you mentioned this cancer type, others will come forward. Your daughter is lucky to have you. You may have to vent once in a while to keep your sanity. There are so many challenges to face. Give hugs to the babies, I bet they're beautiful.

      over 3 years ago
    • carm's Avatar

      Hello, I am an oncology/end of life nurse. I have attached a link that might give you the answers you seek. Should you have any questions for me, you can always find me here. Best of luck to you, Carm RN.


      over 3 years ago
    • Tracy's Avatar

      This site is great for connecting to others and getting support. We all know the need to vent and have lots of hugs to give. Remember to give your family lots of love and take things day by day. Children are amazingly resilient if you stay upbeat they take this energy from you. That is easy to say but not to do when things get painful. If you need to talk I am available, Tracy

      over 3 years ago

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