Naaman's Journal

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Still doing great

April 2021 April 2022 Hello, Team Naaman! Naaman is enjoying school and home life, still doing well post-humanized CAR-T.  He gets tired easily and hasn’t escaped colds and coughs, but overall is feeling great.  This photo side-by-side shows how far he’s come since last year.  Today he can walk, talk, and eat: things he could not do on his own last April. He is getting closer to taking out the NG tube and we hope

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Two Month Post CAR-T update

Two months… Naaman made it. Time flies. Naaman is already two months post humanized CAR-T cell infusion. He had labs done at Yale this week which show those ninja cells are working. Amen! We are looking for ZERO B cells, which indicates the CAR-T cells are working.  He does have a teeny bit (0.07%) and his team reports this is an OK number. Next month, Naaaman heads to CHOP for his three month follow-up which

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Happy 5th Birthday, Naaman!

Naaman had the perfect birthday gift: starting back at school! He could not wait to see his friends and play again. He still has his NG tube and Broviac IV lines, but his counts are high enough that he can go, and he has fewer appointments interrupting his day now (Monthly clinic, weekly OT/PT). Naaman celebrated this weekend at one of his favorite places that he has not visited for two years, IKEA New Haven. 

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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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