|
| GOOD News from Tommy Hopkins | Hi everyone.
Tom had clinic today. All of his lab work was beautiful. The graft versus host disease is gone. It can come back from time to time. We just have to watch.Dr. Staba, the transplant doctor and Dr. Miller, the endocrinologist, are very optimistic about his prognosis. He will be 6 months post transplant on February 2nd. After that time, Dr. Staba will have his brain MRI repeated to look for( regression, no change or progression ) in the demylenation(ALD). At that time she will have a better idea as to the success of the transplant. They will also do a repeat long chain fatty acid test at that time to be sure his body is now breaking down these fats properly. These tests will be repeated at nine mos and a year and then every six months thereafter.
We still need the prayers, especially with the tests just around the corner now. He still has to wear his mask anytime he is near people outside of immediate family.
On an unusual note and unexpected, I have some "weird" news. About three months ago, they drew 15 tubes of blood from Tommy to do genetic testing to try to determine where the ALD came from so to speak. His doctor has been trying for sometime to get a straight answer from the genetics lab. She was finally told what was up. Apparently, the lab did a few tests and ran out of blood?! 15 tubes! Well, if that wasn't enough, the few tests they did get done didn't show any ALD gene.!!!! Dr. Staba said this happens in about 40% of the cases. No one knows why. Personally, I believe it's because the Lord is healing him. Maybe the lab was afraid the hospital would be sued for misdiagnosis. Who knows... I know he had the disease. I also know God is awesome and his work is perfect. Now you have to understand that even if the ALD is halted in it's tracks by the transplant, his DNA would still show the ALD gene. That can't be changed. You can't alter DNA, even with a transplant.
My faith is constantly tested and I do get weak sometimes, but ultimately, I know who's in charge of the situation and what he is doing. ALL praise and glory go to God. As I said, I still ask for your faithful prayers. We still have a long way to go in this. Several years actually. Thank you guys for staying strong with me for us. I love you all.
Shelly
Have an opinion on
this story? Post a message on
our Message Board! or Email KARNACto send a letter to the editor!
|
