Unfortunately, Caleb’s adeno level was confirmed at around 8000 yesterday late afternoon.

We were in clinic again today (after yesterday’s scheduled visit) from 11 a to 5 p for the cydofovir, which involves a 1 hr fluid bolis (just a “dump” of fluid) before and after the 1 hr med infusion. Also three doses of probenecid throughout the day today to help the kidneys, two of which Im giving myself. It’s another crushed tab but ends up being about 10-15 ml by the time you mask it with fluid or popsicle. Very chalky! Just guess how he takes to that. Last dose at 9:10 p.

Also, his chimerism test (percentage Colten’s cells in his body, total cell makeup) indicates one of the three numbers/percentages they look at (the CD3 value) is now at only 73 from 98. The other two are still at 98, one of which is the whole cell makeup which is most important. The 73 percent is for a T cell white blood cell fraction (called CD3), which is actually the excited T cells that most often cause GVHD. It ironically could work in his favor if this number is lower for this reason, however, this value could be as low as 20 she said and it still would not indicate that transplant was a failure or is not not working. 

With someone with cancer cells… the T cell (CD3) value would need to stay at like 100 percent to prevent relapse… but with Caleb’s condition, they are not currently concerned. They want to see this number over time in a trend and one value doesn’t mean much. When they would get concerned is if this number just continues to tank and drop and never rises again. It went from 98 to 73 because, what Im told, is that the T cells are still working hard in there and numbers will change (again, overall T and B cell numbers will not start to improve at all until at least day 100 around Labor Day and will not normalize until 6-12 months out.) If the white cell fraction value tanks, then we need to be worried- it’s not time to worry yet.

They will re-test the chimerism on Tuesday at his next clinic and also do labs to check adeno. We will not have another specific adeno value until tues or wed and will decide on more cydofovir then. He no longer qualifies for CMX due to side effects, so he will not be on that at all. If the adeno gets bad, they will look into the T cell therapy which would involve them taking T cells from Kevin or I and giving them to him via an infusion. Not there yet. Not bad enough to consider this option.

In terms of going home, we are still coming home tomorrow. Feels good to make a decision on it. The adeno in itself can be treated outpatient at weekly clinic- and was just treated today. The cydofovir infusion is only needed once a week typically. Grounds for admission would still be fevers, if he had marked adeno symptoms or if he was needing daily blood/platelets or his numbers started tanking. The adeno values in themselves are not grounds for admission.

They are going to get us a sleep consult – just waiting on them to contact us. Heard the doctor is very good. Excited to see what advice they have- the BMT nurse navigator said today that they do see patients for involuntary movements and night terrors while sleeping, which he has frequently. Also talked at length with psychology today about how we can start transitioning him, adding more discipline and helping with daytime/nighttime behavior.