PARENTS' JOURNAL
June 16, 2006
We got to Virginia one day, met Dr. Sheehan face to face the next day, and the day after that Hilary was being radiated. Her "10 out of 10 worst pain in her life" was when they removed the screws from the metal halo out of her skull. Apparently the local anesthesia / Lidocaine had worn off from 8 hours earlier that morning when they inserted them. Well, a couple of Darvocets later and with a night in the hospital, Hilary was feeling better, not great, but.....better. We stayed around the hospital in Charlottesville for a few days and ended up doing some fun things while we were there. We toured Monticello, Thomas Jefferson's estate, saw Madame Butterfly at President Monroe's estate put on by one of the local university’s drama department, and did various other historical thingies around the area. We flew back to San Antonio, and it was pretty much time for school to start for the girls, again. Not much of a Summer vacation for a 13 year old. :(
Everything went pretty well for several months until Hilary told us one day that she realized her vision was getting worse in one of her eyes, again. AGHHHHH!!!! We saw Dr. Bogaev the next day, and he referred us to a neuro-ophthalmologist, Dr. Carter, at the University of Texas Health Science Center (UTHSC) Medical School. He had Hilary do computerized visual fields that revealed she could only see ˝ to 1/3 of what the rest of us see out of one of her eyes. The rest of her vision was just black. Well, that was scary! The diagnosis was "radiation-induced optic neuritis". He explained that the way Gamma-Knife radiation works to kill tumors is that it kills the blood supply to the tumor. Sometimes the same blood vessels that supply tumors also supply nearby nerves, so when the blood supply to the nerves are decreased the nerve starts to die and in the case of optic nerves, the vision starts to suffer. Dr. Carter placed Hil on a full strength Aspirin a day, and Trental, a medicine that makes the red blood cells more flexible so they can get into smaller vessels. After three weeks of worsening visual fields, to the point where one eye was almost completely blind, Hil was started on a mega large dose of steroids. Another couple of weeks showed a nerve-wrackingly slow reversal of her blindness. So slow that Dr. Carter started Hil on daily hyperbaric oxygen treatments. A couple of weeks into the hyperbaric treatments, Hilary developed steroid-induced Diabetes, requiring her to check her blood sugar by fingerstick and get four Insulin injections a day. This was during Nov / Dec 2005. We had to pull Hilary out of school and place her in a homebound program because she was missing so many classes. These were a very rough couple of months! Our family and friends at church and in the neighborhood were so supportive with their time and bringing meals. I don't see how we would have gotten through this time without good...really good friends. Our thanks to all of you. Really.
Toward the end of the hyperbarics, Hil's vision showed marked improvement! Dr. Carter started weaning the steroid dose down, slowly, so as not to cause rebound problems, and Hilary tolerated all this really well. When her steroid dose came down, so did her blood sugars, to the point where she no longer needed the Insulin, and life was good for a few months. I'll try to get this up to current day soon as I get time.
(more to come)
Return to Hilary's Main Page