Leukocoria

One of the challenges of diagnosing retinoblastoma early centers around the fact that it causes very few symptoms and can often go undiagnosed for some period of time.  The most common presenting sign of retinoblastoma is leukocoria, or the white pupillary reflex.  This is most often noticed on a photo of the child.  Instead of the normal black or 'red' pupil, the pupil looks strangely white or opaque.  The second most common sign is strabismus - a malalignment of the eyes which prohibit them from precisely focusing on the same point in space.  Making things even more complicated is the fact that strabismus is actually pretty common and only in very rare instances does it represent something serious.

Edward suffered from retinopathy of prematurity (ROP) and as such he had to have regular eye exams.  He had a little strabismus last fall, but his eye exam at that time did not reveal any evidence of tumors.  His strabismus continued and maybe got a little worse, but otherwise, he was his happy, normal self. Of course, his next eye exam in March had much different results, revealing bilateral rb tumors.  After soaking in the diagnosis, we frantically searched through all of our photos of the little man to see if we missed leukocoria.  After sifting through the hundreds of photos of Edward (his life has been well documented to say the least), there was one photo that maybe showed a white pupil.  However, it was subtle at best and hindsight is always 20/20, so we did not feel that we had missed anything obvious.  However, a couple weeks after his diagnosis, Katie got a new phone with a slightly different flash and out of nowhere, we saw it. 

The photo made us stop in our tracks.  We again looked through every old photo of Edward, but still could not find any obvious warning sign.  So, if any of you happen to notice a dramatically white pupil in any picture of a child, definitely do not ignore it.  Of course, there are several things that can cause a white pupil and not all of them are cancer, but a white pupil deserves and requires a thorough opthalmologic evaluation and you might even save the child's life.