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 includes BMA and LP (sedated procedures) in addition to the blood draws.

And how's he doing?

Naaman is a wild, rough little boy.  We thankfully found special custom-made vests for his IVs on Etsy to keep him safe.  He gets tired pretty quickly and has increasing amounts of leg/foot pain that we are monitoring. Nonetheless, he takes a break and gets right back to playing when this happens. 

He still has the NG tube, but we are working very hard to increase his eating and drinking to hopefully remove that soon. He also still has his Broviac IV lines, and his levels will determine when that comes out.  The Broviac can come out if we have strong enough evidence that he doesn’t need more treatment.  Imagine if he could actually go swimming this year?! (Or take a bath??) 

Naaman still has PT and OT outpatient.  He is happy in preschool and we are considering kindergarten for the fall.  

Please pray for continued good counts!

Well-deserved swing time after PT

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