Your comprehensive guide to diagnosis, treatment and lifelong follow up care.
The word “cancer” strikes fear into the heart. Hearing that your own child has been diagnosed with cancer is terrifying, especially if you have never heard of retinoblastoma before.
Life is never the same after diagnosis. You have been thrust into a new world with a different language, unfamiliar procedures and unpredictable twists and turns in the road. Many parents liken this experience to riding a roller coaster blindfolded.
We hope the section will help you find your way forward through the shock and grief of diagnosis, or the challenges of adult survivorship, to discover hope and peace of mind as you navigate your child’s medical care, or your own
Asking questions helps us gather information and make informed decisions. Ask many questions when making decisions about your child’s care.
This is probably the most stressful time of your child’s cancer journey. Understanding the process can help make things a little easier.
Retinoblastoma is caused by errors on the RB1 gene or MYCN gene. They may be inherited or occur spontaneously during early foetal development, or after birth.
A positive, open relationship between you and your child’s medical team is vital to ensure your child and family receives the best possible care.
Understanding procedures will help you stay calm, prepare and support your child and ask appropriate questions about the results.
A range of therapies are used to treat retinoblastoma. Treatment depends on the size and location of the cancer, risk to the child’s life and potential for vision.
Clinical trials systematically test treatments to help medical professionals provide the most effective therapies with minimum side effects
Cancer treatment requires many long days in hospital, With a little thought and planning, you and your child can make these times of hope and even fun.
Around the world, families struggle to find prompt, appropriate care for their child. Many families look beyond their home country for their child’s miracle.
The end of retinoblastoma therapy brings celebration, but also uncertainty. Fear of relapse is an almost universal experience for parents at this time.
Making a decision to move from hope of cure to hope of comfort, and walking with your child to the very end of the road, is a deeply emotional experience.