Naaman's Journal

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Home from CHOP

Powered up That’s a wrap! It’s been some time since an update on the blog (follow @TeamNaaman on social media for more frequent details). Sorry for the delay! Naaman has finished his treatment at CHOP and moved back to CT.  The photo above was his Day 30 LP, bone marrow aspirate, and blood draw to check how his body has taken the new ninja cells. His spinal fluid and bone marrow are clear and B

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Brief Admission for Fevers

Fevers suggest the cells are working… and fevers also suggest infection or CRS (dangerous reaction with neurological effects).  Naaman spiked a few fevers to pass the threshold requiring admission. One quick spike to 100.5 is not an admission per CHOP rules, but three “lower” fevers or one sharp spike mandates admission. Thankfully, he coursed through the fevers Sunday overnight (yes, 4 am ED visit) through Monday afternoon discharge. He just slept, watched TV, and snuggled. 

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Settled in Philadelphia for CAR-T Infusion

Off to CHOP He made it.  Naaman and Mama took the train down to Philadelphia last Monday.  This was his first time travelling public transportation.  He was a perfect gentleman on the train and is a city-savvy guy already. Home Sweet Home  Naaman has adjusted to his “Philadelphia home,” a chic high-rise in the University City neighborhood, walking distance to CHOP.  Because he is in a clinical trial, this building was available to us, and

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Counting down

It’s less than a week now before Naaman begins pre-CAR-T treatment at CHOP. Next Monday 1/17, Naaman and Mama will head down by train to move into our apartment and get to our first appointment. Neil and Nadine will be down to visit most likely the next weekend.  Hopefully no more surprise 10″ of snow!  Cheeky has been healthy and happy, and is getting excited for his adventure. We hope the Three Kings stopped by

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Merry Christmas from Team Naaman

Wishing our friends and family all over the globe a blessed holiday. This year was another different Christmas, but still a happy one. Our first blessing was avoiding a tibia fracture! Naaman took a spill and couldn’t put weight on his right leg. By day two of no walking, we took him in for an X-ray. (Once again, Yale New Haven Children’s ED – you are awesome and so caring.) Thankfully, no fracture, but he

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Guess who’s going to preschool…

Ready for the Red Room! At last, Naaman’s doctors gave the green light for school.  Naaman is elated to get back to the Red Room with his favorite teachers.  Some of his besties from last year are even in his class again.  We love First Congregational and are so happy they kept a spot for Cheeky.  Naaman went there last year from September until his relapse in February.  Nadine also went there – and so

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Collection complete!

Hello, Team Naaman! Tuesday Naaman enrolled in the clinical trial for humanized CAR-T at CHOP and completed the bloodwork and exams for that.  Wednesday was an even longer day, with 6:00 am arrival at radiology for a central line placement (right side of neck) and over to Buerger Center for pheresis.  CHOP does this all outpatient, which was a big change for us, but given that it was our third collection, Naaman handled it like

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CHOP-bound tomorrow for Humanized CAR-T

Our last warm autumn day at the playground Cheeky made it: this is his humanized CAR-T collection week at CHOP. Monday night we will drive down for Tuesday full of appointments. He will enroll in the study, do bloodwork, doctor exam, and meet the anesthesia team. Technically, this is Naaman’s third collection.  (He needed to repeat a collection at Smilow when he got sick and contaminated the sample. ) Wednesday at CHOP will be a

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