Well, today didn’t go as planned. Surprised? We were, but I guess we should be getting used to the unexpected by now. We arrived at the National Institute of Health (NIH) a little before 9AM for David’s appointment. David and his dad took the Metro into the city, and they arrived just ahead of us. Richard and I drove up, and were initiated to the NIH procedure… metal detectors and vehicle search before entering the compound. It wasn’t the standard routine, but no particular hardship.
We entered the building and were registered and sent upstairs to the clinic. Staff members were friendly and helpful. After a reasonable wait upstairs, David was called back for vitals and then led to a treatment room. We met with a nurse practitioner who asked us all the normal questions. David had been having some issues over the last week or so that we detailed to her: nausea around meal times, short periods of time where he seemed to stare into space and felt “spaced out”. She felt that these were most likely “absent seizures”. A type of very mild seizure that is easily dealt with and has no particular reflection on the state of his disease. (It doesn’t mean that he is better or worse, it’s just something that happens sometimes with brain tumor patients.) The doctor later confirmed this diagnosis, and David will get some medication that should make him feel more normal.
After visiting with the Nurse Practitioner, and eating some very greasy pizza, we were led to a conference room to meet with the Oncologist. He seemed very knowledgeable and he was very concerned about the spot on David’s spine since it has been progressively causing him more pain. He recommended that we seek immediate radiation on his spine, and in fact, thought we should table all discussion of the clinical trials until after we have dealt with this spinal tumor.
We were a bit stunned because we hadn’t expected that, but it made sense, so we scheduled a consult with the radiation oncologist at MCV/VCU. The doctors at NIH gave a thumbs up to MCV as a more local hospital for David that could still do high quality radiation. They believe it will be a 2-3 week regimen. At the end of that regimen, we anticipate being able to start a clinical trial, though, as of yet, that trial is undefined.
After leaving the NIH, I placed a few calls to some old friends in San Diego who put me in touch with other friends I had lost touch with. These friends are all involved with the world of spinal cord injuries and had some expert advice to share. Bill, one of the PVA guys I worked with, put me in touch with Dr. Gerhart, who is now the Chief of the SCI Unit at the VA in San Diego. He told me that he had seen some successful spinal radiation to deal with tumors and felt that we were probably heading in the right direction. Another good friend, Sharon, put me in touch with the former Chief of the SCI Unit at the VA in San Diego. This doctor, Dr. Szollar, was also very helpful because she is a brain tumor survivor as well. I am so grateful to all of them for the time they took to help me navigate these waters. I shared the info with David’s dad, and I think we are heading in the right direction.
David seems to be taking everything in stride. He is always positive, and he chose to do the radiation. He is eager to fight this thing, and is so much braver than I think I could ever be. I’m so proud of how involved he has become now that he is empowered to make these decisions. It may just be a few days difference, but from 17 to 18 has made a significant impact on him.
David still feels pretty good, and I think he will feel better as we get some new medication and the radiation eases the pressure on his spine. We appreciate all the prayers being lifted on his behalf. The road seems to have a lot of twists and turns, but we’re still going strong.