Naaman's Journal

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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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CAR-T recovery at home

Naaman continues to recover from the CAR-T infusion at home. He is walking, using the potty, and tolerates tube feedings.  He has his counts checked twice weekly at clinic and does PT/OT virtually at home.  No public places, no social visits, just home with immediate family. While he hasn’t needed any blood or platelet transfusions yet, he has no immune system. Even a little cold virus could do a lot of damage right now. The

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Home from CAR-T infusion

Naaman is home! He got to come home Friday, which was Day 10. Still no overt symptoms of the scary side effects, except sharp and strong mood swings. What’s next? Naaman’s counts will continue to drop as the T-cells do their job. He stays home and his only outing is clinic (not even in-person PT/OT just yet.  He will be seen in clinic a few times per week and have his counts checked. He will

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Almost ready to go home

Naaman is doing great with CAR-T as of today, Day 6.  His counts have dropped (they should with the infusion), he has diarrhea from the meds, and he has sharp mood swings. He isn’t spiking fevers or showing neurological symptoms which are the things we are most concerned about.  If Cheeky keeps up the good response, we can go home on Friday, Day 10. Ten days out from infusion, if he hasn’t shown signs of

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CAR-T Day

Ready to become a ninja! Yesterday was Day 0 for Naaman! He was admitted last Thursday for chemo and was ready for infusion Tuesday.  One of his nurses, Molly, made him his special shirt. He was cool as a cucumber, completely unfazed by the 20 people administering/observing the infusion.  It took just 15 minutes for that tiny, mighty bag to drop.     That tiny bag has 200 million ninja T cells! Naaman will be inpatient

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