State of the Union


Wow.  I haven’t written a blog post in so long that I couldn’t even remember my sign in.  Terrible.  Writing is therapeutic.  I think of blog post topics all the time… 2am, while I’m driving in the car, and many other inconvenient times.


The State of the Union of Wes’ Treatment.  The State of the Union as We Approach One Year Since His Last Chemo Treatment.  The State of the Union of This is Our New Normal and We Don’t Stop To Think About It a Lot Anymore Which is a Good Thing Sometimes.


Wes went in for what is called a VEP earlier this week.  It is a vision exam that is given to non-verbal children.  He can’t tell you he can read the 3rd line down, right?  So what they do is hook up 3 electrodes to various parts of his head (which involves cleaning off the spots, sticking them on, and then covering two of them with a super fun athletic band) and point a video camera at his pupil while the other eye is covered and he is watching varying heights of black and white horizontal lines go across a screen.  They pull the data together from what his pupil is doing and what the electrodes tell them and they get a pretty good idea of what his vision is in each eye.

Wes eye exam


They are approximating his vision in his right eye to be 20/20, and in his left eye it came up as 20/150 but the doctor feels that is too high of an estimate given how large the tumor was in the smack-dab center of that eye.

It has been a little over a year since they conducted this test, and the results came out essentially the same.  We are celebrating that fact, because the tumor in his left eye was huge and did shrink with chemo but then every time he has to get cryotherapy in that eye  on little bitty tumor seeds in various parts of the eye the cryo permanently damages the spot is applied to so he won’t see out of that spot either.

I hear what the doctor is saying about the estimate for the left eye being high in her opinion (she thinks he doesn’t see much at all), but as a mom I watched him not freak out as much when they covered his good eye and I’ve seen him have pretty darn good depth perception so I think he sees quite a bit out of that eye.

Wes made a couple friends in the waiting area at the eye clinic – with the multiple steps involved in these appointments we were there for almost three hours!

Wes waiting room

This poor doctor, I ask her the same question every time I see her.  And bless her heart, she answers me straight and true every time and is patient and kind with all the questions I have.  She even told us that she talked to another doctor in Canada about Wes’ case over the weekend.  Let me repeat that – OVER THE WEEKEND.  What?!  Oh, and Canada has the the world’s leading research center for retinoblastoma and that is where our amazing doctor trained.

Back to the question I always ask her – is his disease well-managed right now so we are staying the course?  It’s not always worded that way, but that’s the crux of it.  Her answer thus far has been yes.  They feel that finding some little bit to zap with cryotherapy as often as they are now is still normal, and those little bits are responding to the cryotherapy.  We are as good as it gets at this point.  Carry on.



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