Naaman's Journal

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CAR-T recovery at home

Naaman continues to recover from the CAR-T infusion at home. He is walking, using the potty, and tolerates tube feedings.  He has his counts checked twice weekly at clinic and does PT/OT virtually at home.  No public places, no social visits, just home with immediate family. While he hasn’t needed any blood or platelet transfusions yet, he has no immune system. Even a little cold virus could do a lot of damage right now. The

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Home from CAR-T infusion

Naaman is home! He got to come home Friday, which was Day 10. Still no overt symptoms of the scary side effects, except sharp and strong mood swings. What’s next? Naaman’s counts will continue to drop as the T-cells do their job. He stays home and his only outing is clinic (not even in-person PT/OT just yet.  He will be seen in clinic a few times per week and have his counts checked. He will

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Almost ready to go home

Naaman is doing great with CAR-T as of today, Day 6.  His counts have dropped (they should with the infusion), he has diarrhea from the meds, and he has sharp mood swings. He isn’t spiking fevers or showing neurological symptoms which are the things we are most concerned about.  If Cheeky keeps up the good response, we can go home on Friday, Day 10. Ten days out from infusion, if he hasn’t shown signs of

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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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