Still Waiting

After so many years of this, we should not be surprised that we are still waiting for instructions. Hurry up and wait and wait and wait. On May 6 we got all that information. It is now May 22 and we have not learned anything substantive since then. In the meantime, Jon has been improving very slowly from the various ailments that have afflicted him and discouraged him -- mouth sore from radiation (better now), some nasty tongue fungus that the doctors cannot agree on how to treat because they don't agree on what it is, a cough that does not get better and gets worse occasionally. His appetite is not much. 

Jon has asked for updates and has sent a number of inquiries. Sometimes they call him back. The last response we got from Dr. Imus was that they are planning to put him on a different drug from the one that was discussed, but one that still requires him to get small doses while staying at Johns Hopkins so they can watch over him. They have put off the CAR-T idea for now, as they worry that he will not be strong enough, and it takes so long to get it set up. He said in the next week or two. 

So little by little, Jon has returned to his normal activities. He has minimal energy and pretty low spirits, but he has resumed cooking (and shopping) and he spent the day in Loudoun yesterday working with the mechanic who comes on Tuesdays.

Benjamin and Mika have been here for a week, brightening our days. They go back home next Monday. 

I hope I will have something more concrete to report soon. It just seemed like 17 days was long enough between reports, given that we were told there was a great deal of urgency.

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