A Therapeutic Alliance
Children with retinoblastoma experience months or years of treatment and follow up care. You will be expected to arrange medical tests with different departments and ensure your child attends all appointments, procedures and therapies as prescribed by the doctor.
You will give medications, prepare and support your child through countless EUAs and other procedures, and even do certain procedures yourself. You will need to be constantly vigilant about treatment side effects, and help your child cope with all the effects of their cancer.
To ensure your child has the highest possible quality of life during treatment and beyond, you will need a good working partnership with your child’s doctors, nurses and therapists.
Your child will be treated by an ophthalmologist (eye doctor) and oncologist (cancer doctor) who will work together to plan and deliver treatment.
Doctors must give clear explanations and listen fully to your concerns. You must feel confident about asking questions and sharing your concerns.
Conflict with doctors or nurses is almost inevitable at some point. Settling disagreements quickly is imperative for your sanity and your child’s wellbeing.
A second opinion can help if you are unsure about proposed treatment or the doctor’s ability to treat your child, or if previous treatments have failed.
Changing doctors is a big step, as continuity of care is essential in cancer treatment. However, it can become necessary for some families.
The roles and responsibilities of doctors and nurses can be confusing, especially in the early days when you are overwhelmed with the experience.