Posted by Steph in
2 Years Post-Treatment, Eyes, on Saturday, June 13. 2009 at
This doctor is a very busy man. The waiting chairs were filled with elderly people. Asher and I felt out of place there, however, they did have some toys in the main waiting room (only allowed there before the appointment time, though). The next two hours and fifteen minutes would be spent in this small crowded area between lots of exam rooms. There were so many employees, and everything was so smooth. No one spent more than 5 minutes in any exam room. The doctor would go room to room to room. Asher was really taking it all in.
First the gal asked Asher if he knew his letters. He said he did and she said, "Good, glad I don't have to get the pictures out." She had him hold a tissue over his left eye (seriously, a tissue?) and read the letters. The right eye tested at 20/25, she said. Now to the next eye. He couldn't see anything right away, so she moved to huge letters and he started reading and then she went smaller till he got too many wrong. At one point, she said, "Do you have that eye covered? I need to make sure." It looked like he had moved the tissue over a bit and was peaking with his right (good) eye to help read the letters. In the end she said the eye was 20/60. Then she put a drop in each eye, to dilate his eyes, and off to the waiting area, where we sat for awhile. Asher tried to play his DS but he couldn't see it anymore. We listened to some war stories from a couple of the elderly men talking. We listened to one man say he waited too long to get his eye examed and now it was really bad. As we sat and listened Asher asked questions about different things, little here and there. He was not happy his vision was "burry, I mean blur ee."
Finally they called, "Asher." Into the exam room, in the big chair, with a huge smile he went. A minute later the doctor came in, "Hi dude," he said. "I'll be with you in a few minutes," he said, as he grabbed special head gear glasses and went back in the adjoining room. With a smile, Asher said, "Was that the doctor?" "Yes, honey." "Doctor, doctor what is his name?" "Dr. Sipperly," I said. "Dr. Slipperly?" I smiled and I just cracked up laughing. I laughed and laughed. I got up and went over to him and whispered in his ear, "Not Dr. Slipperly, Doctor Sipperly. Sip per lee." He smiled big. Giggling he said, "Dr. Slipperly. Sip perlee."
Several minutes later, the doctor came in. "I hear you are one tough dude." He grabbed some papers and starting reading them. I heard him say, "Medulloblastoma." "OK, lets take a look." He looked in the right eye and said something to the assistant who typed it in the computer. That only took a couple seconds. Then to the left eye. He looked, moved a bit, looked, moved a bit....let out a little sigh and asked Asher if he liked motorcycles. Then he put the eye exam machine over to Asher and told Asher to lean forward, grab the bars and make a motorcycle sound. Asher didn't, so the doctor did it. Asher smiled. Then the doc started to look....Asher was having trouble holding his eyes open with the light. The doc could hold open the right one and look, but not the left one, which he really needed to see in. So, he said, "OK, he's not liking this. Let's send him to photo." He turned to me and said they were going to take pictures of his eyes and then he would come in and tell me about them.
So, back to the waiting room, area, between the exam rooms. And more waiting. I listened to Asher beg, "I want to see again. I want to go." It kept on a bit until I told him to play thumb wars with me....then rock paper scissors....(remind me to bring a children's book next time I go....oh wait, there won't be a next time).
Finally, the tech called Asher in for photos. This was painful for me to watch. He had to open his eyes and then this camera flashed a bright light into them. He would jump every time. He was moving his eyeballs around a lot and closing his eyes a lot, so it took longer than it needed to. Poor kid. I gave him a big hug and told him he did great when she said she got the pictures. He whispered to me, "Do you have a kleenex?" Then he cried a little and dabbed his eyes with the kleenex I gave him. Then he watched the printer print the pictures, which she said was our copy. He was excited to see them. He asked me lots of things and I told him to wait for the doctor to tell us.
Fundus photo - right eye
Fundus photo - left eye
Many minutes later the doctor came in. He looked at the pictures on the computer monitor. He turned around to me and said, "In his craniotomies, did he hemorrhage?" I said, "I don't know. He lost a lot of blood the first one. They had to stop before getting all the tumor out and go in two weeks later. that time he didn't lose much blood." I didn't know what hemorrhage meant, when he asked.... Then the doctor said, "Well this appears to be scarring. We often see this in shaken babies." (Seriously? How do you go from brain tumor, cancer, craniotomy, hemorrhage, nearly died from blood loss, to shaken baby!?) He said it is permanent and he didn't know what would happen with his vision as he ages. He said the reason his central vision is blurred is due to the scarring. He then asked me where the tumor was located and I pulled out some pictures that I brought from the 5/26/06 MRI, which Scott printed at home. "That's some hunk of meat," he said. He asked the gal who tested his eyes if Asher could see better close up or further away and she answered farther away. We briefly talked about the fluid, the optic nerve, and then I showed him a picture of Asher with his left eye going inward. He asked me what the ophthalmologist was going to do about it and I said I didn't know, she sent us to see him. So he said he would write up some notes and get them back to her, and she would probably do some patching to prevent lazy eye.
I'm still so surprised by the different results from three different offices, and different information. I'm tending to believe the ophthalmologist's results, which puts his left eye much worse than 20/60 (and it certainly is not 20/40 as the pediatrician's asst. said). I've watched Asher over the last week....leaning his head to use his right eye over the left when doing crafts or writing, rubbing his left eye after reading, bumping into a wall corner with his left arm/shoulder where the kitchen (well lit) turns towards the hallway, and holding his hand out to the left side of his head making a discussion about peripheral vision.
So, back to the ophthalmologist when Asher can get in....actually, I've decided to see what is said at clinic on 6/24 before paying for another eye doc visit....
Don't you love those photos? I think they're amazing, one of those miracles of modern technology that I continue to marvel over.
Poor Asher B. Is the eye still turning in? Have they given you a good reason as to why that may be happening?
Are there opthalmologists at Phoenix Children's that work specifically with the cancer kids? To my knowledge, there are a number of things that brain tumors and the subsequent cancer treatments can cause.
Your docs may be right on but it would be nice to see a doc that's seen lots of cancer kids. St. Jude doesn't have their own opthalmologists, but there are a number of pediatric opthalmologists nearby who come to St. Jude on clinic days to see the cancer kids.
I'll pray for Asher B, that his vision improves. Of course, this isn't fair, but none of it is.
Hang in there.
Hoping his vision improves Steph! The whole thing just stinks. I'm still thrilled he is cancer free. Hugs darling!