Hold Tight and Pretend It's a Plan

Thalia Naomi with same last name as her mother  Born at 11 AM on Sunday, November 30 in perfect condition. Mother also in perfect condition, but more tired than baby. Baby is already nursing avidly.  6 lbs. 15 ounces, 19 inches

If we can just keep Jon from getting this terrible throwing up disease that is careening all around us (but not coming into the house... yet), we will be totally fine. Jon is truly getting stronger and better. His ankles are still swollen and his PCP just doubled the dose of Lasix, saying that he has pounds of fluid in his feet and ankles, but no one knows why. Cancer can do weird things. The off-season has begun, and the pace is mellow and slow. Jon has resumed his role as dinner cook. Tonight he made an especially deluxe dinner (Chinese) because Alissa is home for a few days, and Andrew came to see us all in our natural habitat.  Then Benjamin's family dropped by and the level of exuberance just about doubled. We have regained our balance. We only felt off-kilter that afternoon when they told us to go home. Now we have the newest plan and all we have to do is stay healthy.  To reassure you that we are doing fine, I offer this documentation of the chaotic dinner table tonight...

Jon got a message yesterday that his cell collection is rescheduled for December 1. By now we have forgotten all the other dates we were focused on, but in fact this is only about one month later than the original pheresis date. For all the turbulence that has occurred in the last two months, it's not so bad to be just a month behind schedule. Whatever that means. One of the issues is that he has not been on any kind of cancer treatment since the end of September. This has given him time to recuperate and he is also in a quiet race against the myeloma, which is starting to rumble again. One week ago today -- only one week! -- Jon said at 5:00 in the morning, "we have a situation." This was the sudden swollen, painful ankles. That is now a memory. Who knows what that was, but it is gone. And then he spent four days in the hospital getting antibiotics for what was probably a viral pneumonia and he was put back on a blood thinner because that was part of his history. The bes...

We were within about 18 hours of starting the process, settled into the hotel room to wait, and Jon got the last call from Interventional Radiology to go through the checklist. They discovered that he is on a blood thinner. No go. You need 48 hours of no blood thinner before they poke a hole in your neck and put in a central line. There is no way around this.  It is hard to describe how frustrating this is.  They will try to reschedule this for next week, but it is a holiday week and they are filled up right now. We are going to check out of this fancy hotel and get our car and go home and resume our lives. This is really tough, emotionally. We have to keep Jon healthy some more while we wait.  We really believed we were going to get there this time. Oh well.

I am sitting in Jon's roasty toast hospital room, waiting for them to let him go. They told him this morning he would be out today, so we don't even need to convince them of anything. It is a cold, grey, damp November day and there are only small tasks to do -- I can hang out inside for as long as this takes. There is still a chance that tomorrow we will go to Hopkins to start the process with more blood tests and an appointment with a nurse, perhaps a transfusion if necessary. I will probably go with him since he still has puffy feet and what am I doing anyway. The parents came back from Japan, they had a great trip, the girls were explosively happy to see them, and I am off duty. Life is very good.

This time in the hospital has been so different, so much less fraught. It's just pneumonia that won't go away quietly. Last time we had a malnourished, non-eating patient who just looked so terrible. Now he looks relatively normal and he no longer needs the oxygen. Waiting to stop having fevers. His blood counts are improving. We hope he will get home tomorrow, he just has to convince the doctors that he is well enough. There is still some small hope that the cell collection could happen at the end of this week, but there are no guarantees. First he has to get home. Last night Jon did the payroll for the farm from his hospital bed. And then late at night he produced all the lists and labels for the final CSA delivery week so that I could print them from his computer at our house. After I got the girls to bed, I started in on Jon's laborious system of creating labels, using a paper cutter and a roll of tape. I cannot imagine another CSA farm that tries to save paper so caref...

I haven't seen Jon since he got into the car with Rebecca last night -- Rebecca is doing all the Jon care while I am responsible for girls and farm. Reports are brief. They went to Kaiser at Tysons and found that he had low oxygen. When they put him on oxygen, he perked up. He had been very low energy all day, so it must have been a lack of oxygen as much as low spirits. It took them all night to decide whether to send him to the hospital. Rebecca came home at 3:00 in the morning as there was nothing really for her to do there, and she needed to be home so I could leave the house at 5:30. The CT scan showed pneumonia, his oxygen level dropped whenever they took away the supplemental oxygen, and his blood counts were low. Late in the morning, he was transported by ambulance. Rebecca went to Virginia Hospital Center to hang out with him and remember things. In the month or so since he left that hospital, he regained all the weight he lost while doing the recent treatment. That treatm...

I definitely do not have permission to write this blog, but enough has been going on that it would be hard to catch up if something goes wrong. The problem is, we have no answers so this is just an update, not an actual report of things we know to be true. We were quietly aiming for the next schedule, which was supposed to start up again next Friday. But we knew better than to announce it because nothing ever goes quite as planned. Last night one of Jon's ankles got really tender to the touch -- both ankles are already swollen beyond anything I have seen. The oncologist on Thursday prescribed Lasix. First dose was this morning. Jon was worried he had a blood clot since his leg was so hard and sore, but it wasn't particularly red. I wondered if it was a side effect of the recent antibiotic he took for pneumonia. Rebecca took him to Urgent Care, they didn't find anything obvious, they gave him some crutches and a boot and told him to stay off his foot. He came home and was co...

Jon's immune system is not up to speed, by any means. The cold progressed well but, as usual, got stuck in his lungs. We know they don't want to continue on to the CAR-T cell therapy unless the T-cells are dependably good, so he reluctantly went to Urgent Care last night to see if he had pneumonia. Yep. Not a viciously bad pneumonia -- no fever, still has some energy -- but enough to see on an X-ray and get another prescription of Levaquin started. So we are back to waiting some more.  But the good news is that he is holding steady with the weight, and he is eating kind of like a regular person, and doing more stuff. Shopping, cooking, taking vehicles to get repaired, ordering parts online, watching sports.  The little girls are doing great. Their parents have been gone since Sunday morning and there have been very few meltdowns and lots of lots of cheerful time. We are heading into a five day stretch with no school and that will be much less predictable, but we are depending ...

It is a quiet Saturday morning -- the first quiet Saturday for me in about six months. The farm season is winding down to just a few ongoing tasks. Once we get the market trucks out the door (those people do not have a quiet morning, only me) I can now go back inside and lie on the couch and read, if I want to.  This blog is not about me, but we are all characters in this ongoing story. The quietest time of day in this house is morning, when Jon and Rebecca are still not up. And for the next 16 days, quiet mornings will be only an aspiration, as we will be grandparent/aunt caretakers of the little girls while their parents finally go on their honeymoon. So this is a luxurious morning. Jon has continued to improve every day. He cooked two meals yesterday and took back the rest of the administrative responsibilities that Rebecca had taken on for the last four weeks. He went shopping and took a turn picking up my mother from the trainer, for the first time in a month. It feels normal ...