Cheeky still needs enough care that the safest place to be is here at Smilow. We had hoped he would be well enough to start chemo last Thursday and be done with the liver meds, but alas, here we are. His bilirubin went up (insignificantly) which is keeping him on the meds to be sure the liver is truly on the mend. He still needs some diuretics and things to keep fluid in/out regulated. He got a yucky case of thrush, also, that seems to be clearing. Hopefully, his platelets will rise and liver will continue to heal, and chemo resumes Thursday.
Yes, really. All things considered, he has hit the markers needed for Day One of Interim Maintenance 2 (except platelets; he was teetering in the 30s and he needs 75). On Day One, he will have a lumbar puncture, methotrexate, and vincristine. He was approved to take a little break from ruxilitinib, his clinical trial drug, but the rest of the oral meds are technically okay to resume. You can see why we really want to go home, but also don’t mind being right here inpatient, under supervision, when all that crazy stuff goes back in him again!
Good things are happening, too.
Naaman is sitting up on his own, standing with support (i.e. holds onto the seat of a chair), and takes steps with support (i.e. holding hands with Mama and Nadine). He is acquiring new vocabulary, although is not quite as chatty as his regular self. He does super cute stuff like have his toy figurines pretend his NG tube is a slide, whooshing them down saying, “Weeeeee, I sliding.” Heartbreaker.
Team Naaman in CT: Cut-a-Thon next Sunday 5/5 from 10:00-3:00 at Serenity Salon and Day Spa in Wallingford.
Hope to see you there, and remember there’s lots of fun stuff to do in Wallingford town center (and Cinco de Mayo fun at New Life Church). Make a nice little Sunday out of it.