leisa's update
Just got an email from the Georgetown Clinical Trial. The trial sponsor requires a 28 day waiting period because of the radiation leisa received on her spine. That's unacceptable at this point. We've waited too long already.
We are mouting a last ditch effort to get the desired chemotherapy drugs for private treatment. The Georgetown doctor (John Marshall) shocked us by telling us the cost-- $27,000/month-- so it is no wonder our insurance company denied the original request. Anyway, we have two trusted friends pulling out the heavy guns to finally get. The oncologist seems a bit miffed that I have gone behind his back to get action. Whatever it takes, I say.
Leisa was very comfortable yesterday and was able to climb the stairs to the second floor for the first time in about two weeks and take a reak shower. Should be improving each day. Spirits remain good as is her fighting spirit. Once she starts chemotherapy, I think she will feel as if the fight has begun and her outlook will further improve. She really can't walk unaided yet but that is soon to happen.
Hate to be rude but people are staying way too long when visiting. Try to keep visits to 15 minutes. So many people come to the house every day. That is wonderful, appreciated, and desirable and we love it. But keep those visits short. The love and caring expressed is humbling. We are so grateful.
Since my job for the last three decades has been to find the most minute details about obscure technical things, I know way too much about cholangiocarcinoma, treatments, and possible outcomes. If you have questions, the NIH and Hopkins websites are most informative. There is also a cholangiocarcinoma.com site with all kinds of info.
I may go back to work someday soon. After more than a month off, retirement sounds better and better. On the other hand, so does eating. Better get back to it soon.
Much love to all concerned.
Jeff
We are mouting a last ditch effort to get the desired chemotherapy drugs for private treatment. The Georgetown doctor (John Marshall) shocked us by telling us the cost-- $27,000/month-- so it is no wonder our insurance company denied the original request. Anyway, we have two trusted friends pulling out the heavy guns to finally get. The oncologist seems a bit miffed that I have gone behind his back to get action. Whatever it takes, I say.
Leisa was very comfortable yesterday and was able to climb the stairs to the second floor for the first time in about two weeks and take a reak shower. Should be improving each day. Spirits remain good as is her fighting spirit. Once she starts chemotherapy, I think she will feel as if the fight has begun and her outlook will further improve. She really can't walk unaided yet but that is soon to happen.
Hate to be rude but people are staying way too long when visiting. Try to keep visits to 15 minutes. So many people come to the house every day. That is wonderful, appreciated, and desirable and we love it. But keep those visits short. The love and caring expressed is humbling. We are so grateful.
Since my job for the last three decades has been to find the most minute details about obscure technical things, I know way too much about cholangiocarcinoma, treatments, and possible outcomes. If you have questions, the NIH and Hopkins websites are most informative. There is also a cholangiocarcinoma.com site with all kinds of info.
I may go back to work someday soon. After more than a month off, retirement sounds better and better. On the other hand, so does eating. Better get back to it soon.
Much love to all concerned.
Jeff
posted by Jeff at 12:17 AM
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