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retinoblastoma?

has anyone faced the challenge of retinoblastoma? i will be taking my son to will's eye hospital in 10 days to determine whether or not he has retinoblastoma- a tumor in his eye. i would like to gather some info from other moms, like did you opt for your child to receive chemo or eye removal? do you ever regret your choice? im praying for the best news from the docs, but trying to prepare myself for the worst. i really love my little boy and even thinking about this breaks my heart.

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brodysmama23

Asked by brodysmama23 at 10:18 PM on Mar. 12, 2010 in Toddlers (1-2)

Level 5 (97 Credits)
Answers (4)
  • I do not know anything about this but I wish you the best of luck for you and your son! Whatever is done is for the best for him.
    vickwu

    Answer by vickwu at 10:43 PM on Mar. 12, 2010

  • i haven't personally dealt with this, but someone in our area did, and the news paper had a small write up on them. At first they just opted for chemo, but the more the mom thought about it, she felt selfish because she was attempted to save the eye for vanity purposes only, they did end up having the eye removed. And they seem to be doing well. That's really all i know. Good luck, and god bless.
    FinleyFirst

    Answer by FinleyFirst at 12:37 AM on Mar. 13, 2010

  • I have no experience with retinoblastoma, but I have had an eye removed. They can make really great looking prosthetics, mine looks totally natural, it's custom made for my eye socket, hand painted to match my other eye, you'd never know it wasn't a "real" eye. Because I had lost the sight in that eye over time I adjusted to the loss of the vision pretty easily. I still have perfect vision in my other eye, can still drive (just nothing bigger than an 8 passenger van) and live a totally normal life.

    I really hope that you get the best news and this becomes an non-issue, and I'm not trying to sway you towards removal over chemo, but I jsut wanted to let you know that it is possible to live a full, complete life with only one eye, and that with a good prosthetic it wouldn't obvious that your child would only have one. Good luck with your son. Fingers crossed for good news.
    canadianmom1974

    Answer by canadianmom1974 at 2:50 AM on Mar. 13, 2010

  • Yes! My son is battleing it now. We found out Nov 13th. He just went through round 4 of chemo. Send me a message with what questions you have!
    nvymom

    Answer by nvymom at 9:12 PM on Mar. 18, 2010

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