Retinoblastoma

Blazekfamily
Blazekfamily Member Posts: 1
edited March 2014 in Childhood Cancers #1
I am looking for anyone in the North Carolina area whose child has or has had Retinoblastoma. I am looking for support and trying to put a support group together.
My daughter is 4 years old and was diagnosed with this cancer at the age of 2.

Comments

  • Kerri Lynn
    Kerri Lynn Member Posts: 17
    hello there! i am unfortunately not in the north carolina area but i am a retinoblastoma survior. i was diagnosed when i was 11 months old in 1990. I am now 20 and living a wonderful life. I have gone through an intense amount of recontructive surgeries after losing my right eye to it. if you need to ask questions, please feel free. i wish all the best for you and your family. :)

    -kerri lynn
  • deedeesouth1
    deedeesouth1 Member Posts: 1
    Hi am not a Cancer survivor and I don't live in North Carolina, but my son is a survivor , he was diagnosed at the age of 3 with Retinablastoma, in his right eye, he's 9 year's old now and has graudated to the cancer survivor client at St. Jude Hospital in Memephis,Tn. He is a tyical 9 year old Boy who love sport's ( Football, Basketball& Wrestling). He plays on the little league teams here in our town, and has learn how to live with his impairment. I would love to join your support group and share things with you and other, if I can be of any help let me know.
  • silvana
    silvana Member Posts: 2
    i have a 3 y kid with retinob.
    may i ask you what kind of treatment has received your baby? was bilateral?, mine has 3 y now, bilateral, seems to have no cancer activity but wanna be sure we are acting fine.