Lots of Forward Motion

Okay, this is the last blog post until next Thursday, October 30. We are always balancing Jon's feelings about too much information and my innate need to tell all. Giving the man a little break. 

Jon finished his last TPN bag today and he is free of the pole. He needs to eat enough to maintain his hard-earned weight and maybe even keep gaining some more back.  He is in touch with the dietician who will help him monitor his progress. Two weeks of TPN was enough. That is awesome. They are leaving the PICC line in just in case, for a week or so.

So, why October 30?  That is the date that Jon will go to Hopkins for apheresis. As I said yesterday, it will be an all day event.

And then, they gave him a whole series of appointments to get ready for the CAR-T infusion which is scheduled for December 15.  When it rains, it pours.  We had been imagining this happening in January when the farm is all closed, but by Dec 15 we will have everything organized and the farm will barely notice my/our absence. Past experience shows that I will be in close touch by text and farm blog and everything will go fine. Jon and I will be in Baltimore from mid-December until sometime in the first half of January. 

From what we understand, the treatment is closely related, in terms of patient experience. to the bone marrow transplants Jon has had. Daily check-ups to monitor everything to make sure he isn't having a bad reaction or running too low on some blood product. It is no fun, but we have been through all of this before. 

Comments

  1. LaurieOctober 24, 2025 at 12:43 PM

    Hurry up and wait...I am glad they are moving forward. I sure hope the time in Baltimore is helpful. If you people are taking shifts to come and visit, count me in.

    ReplyDelete

Post a Comment

Popular posts from this blog

Improving

I haven't been to see him myself yet today, but I hear that he is starting to express some angst about all the things he should be doing on the farm. This is good. It has been days since he even thought to pick up his phone, which certainly was an indication of how terrible he was feeling.  The NG tube was put in yesterday and they started feeding him right away, even though they didn't quite have the equipment in place to do it all to code. Rebecca says they manually pumped the formula, which must have been a challenge since the pace of delivery was supposed to be extremely slow and careful. By 10:00 last night, the charge nurse had installed the pump. They still didn't have all the right equipment but they managed to piece everything together and Jon was fed a small dribble of formula all night long. Today they are working on increasing the dosage, as his stomach shows that it can manage this. Things are looking up. Alissa and Rebecca went in this morning and Anna is taki...
Read more

Rolling Updates from the Waiting Room

I have to admit that we/I did not pay any attention to the details of what to expect today. We have done this a couple of times before, and I have hung out in this waiting room in years past. We were supposed to arrive at 6:30 to check in to Interventional Radiology so Jon could have a central line installed for cell collection. We did that, arriving right on time. They immediately took him back and gave me a number to watch on the board (no more names, just numbers). So I know that the patient is in pre-op. What I don't know is how long this takes, or how far I can wander. Nor do I know when we are expected at the next location for the hours-long pheresis event. Of course, there are reasons for this lack of attention. One is that we trust that we will be instructed as we go, and we are familiar enough with the hospital and its systems. Two is that the baby was the most important news, and this was much less interesting.  In brief, Rebecca had an appointment at 8 AM on Friday, the ...
Read more

Back Into the Hospital

Since the last report, a little over a year ago, Jon has been dealing with a lot of treatment-related symptoms. It has been a tough 15 months or so since he started on the Telqetamab. The main side effect was loss of taste, which led to a general loss of appetite and a struggle to eat. Through it all, Jon has continued to take care of us by cooking our dinners, maintaining so much at the farm, helping us to keep everything going. By about June, that treatment stopped being effective and the oncologists decided that he was strong enough to be a candidate for CAR-T (another long and involved process that can be described later, but it holds promise), even though he lost about 40 pounds in that year. His spirits were good, his energy was good, he had adapted to his loss of taste. The doctors prescribed a bridge treatment, something to keep the myeloma quiet if possible. It was known to have many dire side effects. Back to the decadron, a whomping amount of steroids that means very little ...
Read more