Naaman's Journal

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

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

Using a power grip while Miss Kim isn’t looking… Hi, Team Naaman! We are awaiting the date for Naaman’s collection at CHOP. They would like to enroll him in the study, begin his labs, and do the collection in one trip to help us out.  That should take a few days, and then about a month later he will go back to CHOP for cell infusion and become a Philadelphian for six weeks.  In the

Answered prayer: the decision was clear that humanized CAR-T is the best next step for Naaman.  We had a successful consult at CHOP and will know dates and details once Naaman is scheduled.  We will return to Philly to sign consent for the clinical trial, draw blood cultures, and (hopefully in the same trip) collect a sample to make the CAR-T. What is humanized CAR-T? It is different than the CAR-T Naaman already did in

This Friday 10/29, we have a consult appointment at Children’s Hospital of Philadelphia (CHOP) to decide if humanized CAR-T is the next move.  Otherwise, we press on to the bone marrow transplant at Yale, which would be the week of 11/29, based on when Naaman’s donor is ready. We are swamped with planning this last minute trip and will update ASAP. Praying for clear decision-making.

No major updates yet on transplant. Naaman has been busy playing and cramming in as much fun as he can.  Legos, playdough, hikes, playing outside… he even baked some bread! (And ate a little, too.)  It’s been really temperate weather so we have been very lucky to be out in public more outdoors. We are awaiting a consult with Children’s Hospital of Philadelphia (CHOP) for the humanized CAR-T. In general, Naaman is a candidate, since

Quick update on transplant planning…   Naaman’s donors are getting set. There’s two ready, but prep and travel are being arranged.  If all goes as planned, Naaman would be admitted the week of 11/15 for the transplant. While Naaman’s not a candidate to do the same CAR-T again, he may be a candidate for another type called humanized CAR-T.  We still have a lot to consider. Results from last week… Brain MRI shows no new

For those of you who do not use Facebook, we have big news: Roc Solid Foundation sent a playset! Roc Solid is based in NC and comes to the home of a child with cancer and makes magic happen (aka builds them a playset). For families out of the area, they send the playset.  All of this – free to the families. For homebound kids, this is HUGE. Naaman and Nadine could not believe they