Five Months Since CAR-T

Here is where we are right now. No cancer evident, in blood or on scans. The engineered T-cells are doing their job. That is excellent. We could not have hoped for anything better. This is the first time in 17 years that Jon has not had some level of active cancer. It will be back, but no one knows when, and we don't need to try to make predictions.

Jon is still coughing, and it feels like he has always had a cough. He certainly has had a cough for most of the last two years by now. This must be evidence that his lungs have taken a real beating and just don't work like they used to. Coughing is exhausting and demoralizing.

He finally went to see if there was anything dire happening and the doctor at Urgent Care said it's just the same old thing -- a long lasting viral thing, maybe. I don't even remember if they gave him an antibiotic this time. In fact they said that his lungs look better this time than the last time he went in (he had pneumonia at the end of April, but he didn't end up in the hospital, so that was good.).

Anyway, we haven't hit the sweet spot of health yet. The last few weeks have been rough. Once again, all this takes a toll on his spirits and he starts to feel hopeless and useless. But as soon as he has just the slightest amount of energy, he is back to trying to fix things, or shopping, or cooking. And we did take another trip to Pennsylvania recently to retrieve our repaired tractor, and he did at least half of the driving.

My shift with Thalia has switched to about 6:30 AM to 8 AM, and then Jon usually takes over so Rebecca can catch up with some of the sleep she missed in the night when Thalia was doing her once an hour routine. This baby is delightful in the morning, and that's when grandparents reap the rewards. Both grandparents have rediscovered the skills we forgot long ago, and it is so much fun to hang out with a busy baby who is careening around the house, pulling stuff off the shelves, chortling. 

When the big girls come bounding into the house, Jon forgets his cough and gives them his full attention -- it takes a lot of focus because they both talk at the same time, relaying all of the news from their day. It is good to be home, it is good to be surrounded by cheerful children, and it will be great whenever this cough finally goes away.

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