April 1, 2018
Many days in bed challenge the muscle tone and the mind (the caregiver’s and the patient’s).
Heather slept over last night, taking good care of her dad, as you can imagine. I arrived this morning and learned that he had developed a headache in the occipital region overnight and I found him very sleepy.
I called the doctor who had just seen him. Could a headache and sleepiness be symptoms of neurotoxicity? He reassured me that he had just rounded on him, put him under the proverbial cognitive microscope and that Brian had passed the test with flying colors! Yes, our sleepy guy knew his “serial 7s”, could easily spell “world” backward and was completely behaviorally appropriate.
Lack of activity (essentially sleeping all day) leads to poor muscle tone and lazy bowels. No kidding, these are BK’s own words.
Sleepy? Constipated? Here’s hoping that having walked several laps around the ward will help with both.
The good news is that Brian has had no fever for 48 hours now and his inflammatory markers have stabilized or have begun to fall. Except for a significant drop in his neutrophil count (just above 500) and a rise in his lymphocyte count (which likely represents the expansion of his re-engineered t-cells), his hematological tests and blood chemistries all remain stable.
If the trend continues, we should be back at the hotel by tomorrow night. Brian may have glided through a “sweet spot’ in the cytokine storm, with significant fevers, chills and rising inflammatory markers, but never becoming hemodynamically unstable or neurotoxic.
Here is some recent thinking on CAR-T (Chimeric Antigen Receptor Therapy): There is reason to believe that having CRS (cytokine release syndrome) is what is important, not the severity of the storm.
Let’s hope we will soon see CLL (chronic lymphocytic leukemia) in the rear-view mirror.
And let’s hope Brian sleeps better tonight. Patty