Signage outside Dave’s room
“Begin with the end in mind.” – Steven Covey
Well, yesterday was T-Day! Four tiny little bags that seemed as if there was nothing in them at all! Each bag took about 10 minutes to dispense, and the cell lab expert was waiting with them in a frozen cooler. As each bag was dispensed, she would thaw the next bag, and they would all check and double-check that these were Dave’s cells.
It was pretty crowded in our room as things began to happen. Peeps wanted to observe the process—our doctor and others connected to Myeloma and excited about Car T being available to our patient population. We were totally fine with the teaching aspect of it all.
Checking it twice!
We also had UAMS media people who stopped by to photograph, videotape, and interview us about our Myeloma experience and how we are now getting this excellent new therapy.
We also have two nurses working together to cover 24 hrs for the next three days. So there is continuity of care, and trust develops. It’s a great idea as Dave has to have neurological exams regularly throughout the 24 hours by the nurses and the neurological team at UAMS. It’s helpful if there is continuity in administering it, as it can be a little bit subjective. The nurses have a set of things they do, and then the neuro team does a much broader exam. The short-term and long-term side effect is neurological toxicity. So once we head home, and even while we are here as outpatients, I’ll monitor him closely and have a list of things to be watchful for. He isn’t supposed to drive a car for eight weeks for the same reasons. (Ooooh, lucky me, I get to keep driving his cool new car!)
View from his room
During the day, he slept and slept most likely due to the Benadryl drip he received pre-infusion. I got a couple of deep naps in as well. Then during the night, he got the chills. (His nausea symptoms were adequately managed.) Anyway, three blankets and a heavy sweater, and he was still shaking. His fever spiked up to 101 around 1:30 AM, and they were on it. This morning he was up, sitting in the recliner, happy, chatty, drinking coffee, with no fever and no chills. Dr. van Rhee stopped by at 6 AM, getting ready for his day, and checked on both of us. He was delighted with how well Dave had done so far. He assured us that Dave may not have a bad reaction and that it’s the first 24-48 hrs where side effects are most likely to occur. So we are just about at the 24-hour mark as I’m writing this post.
I’ve been sending tips and suggestions to the two patients coming behind us. Bring hangers; they don’t have any! Bring a charging station for your phone and iPad—stuff like that. All in all, we are good and glad to have met this significant target without any more Myeloma drama.
We look forward to the subsequent target attainment, which is complete remission!
