The most common symptom of retinoblastoma is when a child’s pupil appears white when a light is shined in the eye. This is called leukocoria (Greek for “white pupil”) and is sometimes referred to as “the cat’s eye reflex.” This is often first noticed when parents look at photographs of their child and see that one pupil appears white instead of black or red.
Another symptom of retinoblastoma is strabismus—when the affected eye drifts inward (esotropia) or outward (exotropia). However, most children who have strabismus do not have retinoblastoma. Occasionally, children with retinoblastoma have irises of different colors. Very large tumors can cause pain or swelling, but this is not common. Vision loss is another symptom of retinoblastoma, but parents rarely know about it because young children generally do not talk about vision problems. Apart from the symptoms above, a child with retinoblastoma will likely seem healthy.
It took a few days to get a diagnosis. On a Friday morning, at Noah’s 2-month checkup, the pediatrician noticed a white reflex in one of his pupils and showed me the difference between the eyes. When I asked what would cause it, he was vague and said he would call an ophthalmologist for an appointment for us. When the ophthalmologist’s office called asking us to come in that same day, we began to realize that something quite serious must be going on.
The ophthalmologist said Noah either had cancer or another progressive condition and he would need to be seen by a retina specialist in Seattle (a 1 hour and 45 minute drive away). When we asked if he would be able to see out of the eye, he very matter-of-factly informed us that there was no question that he could not see and would not see again from that eye.
On Monday morning, we were told that Noah had retinoblastoma, the tumor was very large, and the eye would need to be removed. We were in shock and scared of the tests and surgery he would need. It was hard to imagine what it would be like for him to lose his eye, and we were worried about the possibility of metastases [spread of the tumor]. Everything seemed very unreal, but we just did what had to be done.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups