This week has been a busy one! We survived hurricane Irene; we had no power for about eight hours, but due to the generator we bought a few years ago after finishing the basement, we were barely inconvenienced. Thankfully we didn't even need to use it to power our sump pumps. The power outage caused Neya's school to be closed Monday, so her first day of second grade was delayed a day. She is now happily settled into school, and loves her new teacher. I think she'll have another good school year!
Monday was a big day for Collin; he had his very last dose of chemo! God willing, he will never need chemo again! I'm a little nervous because I now I feel like we're not actively waging war against the beast, and I don't want it to ever come back. However, it's nice to not be giving him the measured doses of poison that along with killing cancer cells have also dried out his skin and caused irritability, nausea, constipation, and many other nasty side effects.
I have taken Collin to two Kindermusik classes since my last update. The first week, he didn't want to take off his sunglasses (usually he doesn't keep them on!) and he sat on my lap and buried his face against me. But as the class went on and I participated, I slowly turned him around so he could see what we were doing. By the time the teacher read a book to the kids, Collin got off my lap and sat down right in front of the book, and was pointing to the pictures! By the end of the class, he was having a good time. During the second class, he participated the whole time, singing, dancing, and playing instruments to the best of his ability. It brought tears to my eyes to watch him having so much fun, because I remember where he was a year and a half ago. He's come such a long way since then!
The eye surgery that Collin had in March to straighten his eyes has not worked the way we expected it to. At some point during the tumor resection in April of 2010 and the increased pressure in his brain in the days following the surgery, damage was done to the sixth nerve that controls the lateral rectus muscles of the eyes (the muscles that pull the eyes outward). In March of this year, the pediatric ophthalmologist at Hershey (Dr. W) performed surgery to weaken the medial rectus muscles (the muscles that pull the eye inward) in order to give the lateral rectus muscles a chance to pull the eyes outward with no resistance. Following the surgery, Collin's eyes turned outward a little, but not as much as we had hoped, and now his eyes have turned inward again. To further try to correct the position of the yes, Dr. W is recommending two more surgical procedures. In the first one, he would tighten the lateral rectus muscles so they would pull the eyes outward, and he could also try to further weaken the medial rectus muscles so they are pulling the eyes inward even less. However, in the end, he doesn't feel Collin's eyes will be as straight and mobile as we would like. In the second procedure, he would move the muscles that pull the eyes up and down over to a lateral position so they pull the eyes outward instead of up and down. His eyes would still have some up and down movement, but still wouldn't have as much side to side movement as he would have normally.
Last week we took Collin for a second opinion to the pediatric ophthalmologist (Dr. F) who sent him for the MRI that showed his tumor in 2010. After examining Collin and reviewing his records, Dr. F does not feel that doing the first of the two procedures mentioned above will benefit Collin at all. He feels that at this point, since there has been no improvement in the sixth nerve, that the lateral rectus muscles that pull the eyes outward are esentially dead, and moving them forward on the eyeball will not help them pull the eyes outward. He feels that the best option for improving the alignment of Collin's eyes is the second procedure recommended by Dr. W. However, Dr. F explained that there are some major risks involved with the surgery. The muscles that move the eyes up and down also supply the bloodflow to the front of the eyeball. Removing the blood supply during the surgery to move the muscles can cause inflammation, glaucoma that is extremely difficult to treat, and even blindness. He recommends a blood vessel sparing surgical technique to reduce the risk to Collin's sight. However, there are very few surgeons that perform the surgery using the blood vessel sparing technique.
Dr. F also discussed the option of doing nothing further to Collin's eyes at this time. He said nothing would be lost if we were to wait, and that any surgery could be performed at a later time. Collin has learned to compensate well enough that he has functional vision at this time, although it is nowhere near ideal. Perhaps different surgical techniques will be invented or perfected in the future that would reduce the overall risk to Collin's sight.
Congrats on the last dose of chemo, and prayers for the eyes. We have one more week to spend in the hospital and we are finished.(Other than testing testing and more testing over the duration of Sean's long and wonderful life.)Sean get's excited when we tell him that we are going back to see his nurses....until we get there. Then we can't get him to look at or talk to them.As always praying that these children can just play like the other children there age.
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