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 it’s a huge blessing. We can walk to a small organic market and have laundry in our 1 bedroom-1 library unit.

It has taken some time to post an update because he has been quite occupied with appointments.  Last week was full of chemo, count checks, and scans.  On Monday, he had an LP and BMA to check for cancer cells (all clear!) and Tuesday was his infusion.  Like last time, Naaman was as cool as a cucumber for the big moment, watching Hatchimals on his tablet, sipping some apple juice.  (Thank you, YNHH nurse Molly for the shirt, getting good use!)

CAR-T July 2021
Humanized CAR-T January 2022

Daddy and Deanie came down for the weekend for lots of sibling fun. Our building also has a cinema you can reserve, so we had a private viewing of Sing 2.  We are hoping that all four of us can be together on the weekends.

The cold has been brutal, but we are walking distance to plenty of things: a school playground, Schuykill River trail, the pretty UPenn campus, museums, and a bookstore. (Public libraries are closed.)

That's where we live - the tall one!
Schuykill River Trail

It’s a big deal that Naaman has been feeling so well. The first week, he felt fine after four days straight of chemo. Now we are watching for side effects from the CAR-T infusion. There can be serious, severe neurological effects after infusion, which would show up as fever, confusion, and seizure.  So we are keeping it light and fun, but he is at great risk for the next few weeks of this reaction to the infusion.  In short, that’s why we stay in Philadelphia for the interim.

Thank you for the many messages of prayer and inspiration! We are lifted up every day because of you.

1 thought on “Settled in Philadelphia for CAR-T Infusion”

  1. I thank you for taking the time in your insane schedule to update Team Naaman (I am wearing my team hoodie today). Good luck with clinic. We are praying for you always. I am thankful that God has placed this little boy in just the right family to care for him. Love you always N4!

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