Treatments for various types of childhood cancers evolve and improve over time. The treatments described in this chapter were the ones most commonly used (called standard treatments) when this book was written. You can learn about the newest treatments available by calling (800) 422-6237 and asking for the PDQ (physician data query) for retinoblastoma. This free information, also available online at www.cancer.gov/cancertopics/pdq/pediatrictreatment (scroll down to “Retinoblastoma”) explains the diseases, state-of-the-art treatments, and ongoing clinical trials. Two versions are available:

•  One for families—uses simple language and contains no statistics; and

•  One for professionals—is technical, thorough, and includes citations to scientific literature.

To learn about current Phase III clinical trials for retinoblastoma in children, you can visit the National Cancer Institute’s website www.cancer.gov/clinicaltrials/search. In the “Cancer type/condition” box, choose “retinoblastoma” and choose “Phase III” in the “Trial status/phase” box. Then click the red “Search” button at the bottom of the page.

I am a long-term survivor of bilateral retinoblastoma. I think that parents can be very instrumental in their child’s recovery. Even though it may not be easy, I feel that it is important to be strong and positive. Seek all of the information possible, and don’t hesitate to ask questions. Times will be tough, so please find support, whether it be family counseling focusing on cancer or corresponding with other parents who have had similar experiences. Don’t hold all of your feelings in. Have the same expectations for your child with retinoblastoma as you would for any other. Don’t set limitations for your child; there are already plenty of those out there.