Naaman's Journal

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CAR-T Day

Ready to become a ninja! Yesterday was Day 0 for Naaman! He was admitted last Thursday for chemo and was ready for infusion Tuesday.  One of his nurses, Molly, made him his special shirt. He was cool as a cucumber, completely unfazed by the 20 people administering/observing the infusion.  It took just 15 minutes for that tiny, mighty bag to drop.     That tiny bag has 200 million ninja T cells! Naaman will be inpatient

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Admission this Thursday

Getting some fresh air on the Green downtown Cheeky has been out and about as much as possible, soaking up fresh air before his big admission this Thursday. His collected cells are growing great at Novartis and will arrive at Yale New Haven Thursday.  He will get some meds and hang for a few days, and will start infusion of the T-cells on Monday 7/19.  Naaman still isn’t eating and fine motor skills are super

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NG tube troubles

Cheeky has been pretty happy playing at home, mostly inside during the heatwave. His NG tube is one factor keeping him from summer fun (second factor = Broviac external port) and his NG has behaved itself pretty well until today. His tube pulled out last night while he was sleeping since he sweats the tape off easily (and we replace the tape often). We lobbied to trial a day without the NG tube, but that

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CAR-T Collection Complete

He did it! Naaman scraped by with enough lymphocytes to start CAR-T again. He was admitted Wednesday, sat in bed with the apheresis machine for two days, had some chemo and procedures under sedations, and came home late Friday night. Phew! Sorry, I’m not posting pictures here from his admission. He did way better than the photos look! Not for the faint of heart. Next… The cells go to Novartis on Monday and get trained

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New viruses in the way

Naaman had a short ED visit yesterday. He has a cold and spiked a fever, which automatically sends us to the ED. Fortunately, he got some antibiotics and they sent us home, since he would be in the clinic the next day and could get the second dose of antibiotics, and he was otherwise doing okay.   Turns out he has two viruses: rhinovirus, which is the common cold human metapneumovirus, which is in the

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Collection delayed… but mail from penguins!

CAR-T Collection is delayed, since Naaman didn’t make counts.  His absolute lymphocyte count is still too low. There isn’t anything to do besides wait for it to increase.  They will check his labs again this week and see where he is.  Hopefully, he will be rescheduled for the week of 6/7, just maybe not on 6/7 so he doesn’t miss Deanie’s birthday! Also… Thanks to our wish granters Luke and Lisa with Make-A-Wish, Naaman had

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Fractured Wrist

Sunday afternoon our expert crawler slipped and fractured his left wrist! He has a brace which he’s learning to deal with.  Instead of crawling now he sort of shuffles along on his knees and – yay – standing up a little. Thank goodness he is a righty! He has a follow up with the ortho in two weeks.  The fracture shouldn’t affect starting CAR-T cell collection next week.   That being said, he has a clinic

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CAR-T starting over

As we suspected, Naaman’s collection for CAR-T was found to be contaminated and can’t be used.  Refresher: he tested for staph (MSSA) the same day as collection, which prompted the port removal and surgery for an external Broviac central line. What does that mean? We start over! Naaman will be admitted 5/31 (Memorial Day) to have that temporary big line put in again, and stay for a few days of collection.  He was a champ

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