Naaman's Journal

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Just hanging out for now

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

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BMT Planning Update

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

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Roc Solid Foundation sends a playset!

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

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Bone Marrow Transplant

 We didn’t quite make it to the three month marker for CAR-T. Naaman has not relapsed but his B cells are rising which means the team wants to move to a bone marrow transplant. His B cells needed to be zero, as increasing B cells suggests the T cells aren’t working. The B cells went from zero to 1, and now 146.  While lots of things need to be considered, the bone marrow transplant protocol

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IVIG

Hello, Team Naaman. Football season is upon us and we hope you’re ready. Naaman can’t wait to watch “Josh Allen the superhero” and Tom Brady play for “the pirates.”   IVIG today… Naaman had therapy and clinic today. A typical clinic visit consists of a Broviac IV dressing change, cap change for the IV lines, and IV meds if needed. Today he needed intravenous immunoglobulins (IVIG) which puts antibodies back in him. He has such

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Clinic update

Quick updates! Naaman had some ultrasounds done today to check on his liver. He will see the clotting specialist next week – fingers crossed we can stop his heparin injections for the clots he had after relapse chemo. Naaman also had his regular check at clinic. Immunoglobulins are down (expected) so he will has those infused next week. Otherwise holding steady.   In two weeks, he will have more scans including brain MRI and chest CT.

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Roc Solid Foundation

This is top secret: don’t tell Naaman or Nadine.  In a few weeks, we will have a playset in the backyard! Roc Solid Foundation is an organization based out of Virginia to help children with cancer still have fun. They provide Ready Bags in the hospital and playsets at home.  (Locally, Circle of Care provides these ready bags – they’re awesome).  If you’re located in Virginia/North Carolina, the Roc Solid team comes to you with a super fun

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Day 30 Update

It’s already been a month since CAR-T infusion! Naaman had a bone marrow aspirate and lumbar puncture on Wednesday to monitor his progress at Day 30.    Waking up from sedation… Naaman needs to do his procedures that require sedation in the OR, due to his respiratory issues in the past.  At Day 30, 60, 90 and so on, he will have his bone marrow and spinal fluid checked to be sure the ninja cells

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