Overdue update on Kyle's vision.....

We had an appointment with the eye doc back in January and I am just now making myself sit down and write about it.......


We finally had an appointment with the Ophthalmologist to check on Kyle’s vision yesterday. Kyle has had no change in his vision from last year. In his right eye his vision is 20/800. The doc said that basically the nerve is dead and his vision wont come back in that eye.Little Kyle though is very ingenious I tell you! The doc put tape over the good eye to make him try and use the bad one. Kyle would turn his head to look at the images differently becuase you see there was a little place over th top of his nose that the tape didnt stick so he was adjusting to use his good eye. He was so sly we almost didnt catch it. But once the doctor sealed that gap up Kyle was not very happy. Well neither would you if your vision had been cut off and some man was telling you to name shapes! ha ha

He prescribed glasses for Kyle to protect the left eye. There is no prescription in the left side it is simply for protection for the eye, because obviously we need to make sure to protect his left eye. Well we have since ordered Kyle's glasses. He loves them and does really well with them. We let him pick out the color. He likes to say he is like mommy and daddy now (we both wear glasses).

Many have thought since there is no improvement to the vision that we can stop chemo. Well unfortunately this is not the case. The chemo was never really about his vision and was more about stabilizing the tumor for several reasons, the main ones being 1) to relieve the pressure the tumor was causing on the optic nerve and his little eyeball 2) to keep the tumor from growing and moving to the left side. We were very hopeful that Kyle's vision would have improved but that just wasnt meant to be for him. He has adapted very well and you would never know that he is blind in one eye at all. Our Oncologists talked to the Geneticist and they decided since the baseline was the same that we should continue with the rest of chemo.

Since his tumor has been stable since September (sigh of inner bummer) our Oncologist is pretty confident that if it remains that way we will be done in May and the port should come out sometime the end of May/beginning of June.