• celticgirl68's Avatar

    celticgirl68 asked a questionRare Cancers

    Retinoblastoma

    • bbay65's Avatar
      bbay65

      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.

      almost 4 years ago
    • carm's Avatar
      carm

      Celticgirl68,
      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.

      http://retinoblastoma.com/retinoblastoma/frameset1.htm

      almost 4 years ago
    • Tracy's Avatar
      Tracy

      Hi,
      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

      almost 4 years ago
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    celticgirl68 shared an experience

    Drug or Chemo Therapy (Chemotherapy): After they finish Lili's Chemotherapy, they move her from the operating room to the recovery room. They begin to give her morphine for the pain. When Lili starts to wake up she's in excruciating pain from the therapy. That's why they start with the morphine. Lili will sleep for a few hours, than my daughter, Lili's mom will start to clean her up, give Lili her cup and dim the lights because Lili's eye's are swollen after the therapy. So she'll have the lights off and the t.v on.

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    celticgirl68 shared an experience

    Procedure or Surgery (Surgery): My granddaughter has to have laser surgery on her eyes before she has a round of chemo. Her eye Doctor performs the surgery than a couple of days later my granddaughter gets admitted into the hospital. That's when they start to prepare Lili for her chemo. The next morning is when they start the chemo.

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