Finding words to say the worst

Today I met a completely disarming 6 year old girl. She was sweet and giggly, and very cute even though she lost all of her hair during her chemo and radiation. You could see how big her smile was even before she took off the mask she has to wear whenever she is out in the world, to keep her from getting sick. She has no immune system, you see--she, and her family, are waiting to see if the one she had transplanted into her is going to take.

She was referred to our clinic by her pediatric oncologist because they noticed that one of her eyes was occasionally drifting to the side, almost imperceptibly. My resident was concerned that they hadn't corrected this yet at the age of 6, because if you don't correct those sorts of disorders by age 7 they become almost impossible to fix. Even as he was telling me this I could tell there was something else he was worried about.

One of the worst things about being a doctor is knowing the bad signs. I knew as soon as I watched her pupil react to the swinging flashlight test that things were not okay, that they were a lot worse than we had at first feared. As we completed the eye exam, it was pretty clear that this little girl was blind in her right eye.

How do you tell her and her mother this? They did not come in today because they noticed something was wrong with her eye. They came in for a check up, and after her initial diagnosis, initial chemo and remission, then her relapse, more aggressive treatment, and bone marrow transplant, they thought things were just going to get easier from here. In fact, it was probably the radiation and chemotherapy that did it; the same things that probably saved her life took her right eye as payment.

As the resident went to call the referring doctor, the little girl's mom asked me what we thought. What was wrong? Why was it wrong? What was she seeing in that eye--were things fuzzy? Blurry?

I didn't know what to say. I thought she had seen that when we covered up her daughter's left eye, she couldn't see anything. I didn't know how to tell her she was blind in that eye--that she didn't see fuzzy things; she might--might--see a little light when you shined it right in that eye.

Luckily for me my resident came back, and he carefully explained everything, ending it by saying that the little girl could do whatever she wanted, that this would not hold her back in life at all. I added that just last week we did a check up on a physician who had been blind in one eye since birth. The mom didn't cry; she didn't really even look sad. She looked... the closest I can say is that she looked like a solider. She just put her arm around her daughter and said, "Okay."

And I find myself thinking about them tonight. Did the little girl understand what we were saying? Does she know that she won't ever see out of that eye again? Is her mom crying in her bed tonight?

I doubt it. They are much braver than I, and more thankful for everything they have. She has 20/20 vision in her left eye, and for now, that's enough.