- For the first ophthalmology referral if you have any unusual photos of your child’s eye/s, take these with you.
- Since the treatment includes many interventions, it is crucial to find a specialized clinic with a formed clinical team including pediatric oncologists, ocular oncologists, pediatric ophthalmologists, surgeons, radiation treatment specialists, rehabilitation specialists and genetic counselors.
- After treatment is completed, take in consideration that physical therapy, speech therapy, and a low-vision rehabilitation if needed can improve significantly the quality of life of the children. Ask your pediatric oncologist for more information.
- There are some target therapies and clinical trials with Intravitreal (inside the eye) Chemotherapy for more information click here https://www.stjude.org/research/clinical-trials/iret-retinoblastoma.html
- If the eye is removed, with the right information and education children often find their monocular vision doesn’t limit them in any way. An artificial eye is placed, kids, parents and school teachers (as well as other people involved in the care of the child) need to get used to removing it, wash and replace the eye. When children grow up sometimes become more conscious of their artificial eye. Encourage them to focus on their strengths and not to view themselves as different. Here are some information and child’s testimonies that can be useful and encouraging. http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers-insight-magazine-insight-features
- Seeking support, organizing your child’s health information, making sure all of your
questions are answered, and participating in the decision-making process are other steps.
- Questions to ask the doctor, here is a list of questions that you might want to ask the doctor: http://www.cancer.net/sites/cancer.net/files/asco_answers_retinoblastoma_childhood.pdf