Naaman's Journal

Miles in sparring gear Next month marks one year since Naaman’s humanized CAR-T at Children’s Hospital of Philadelphia. He has been getting monthly labs and check-up at Yale, and bone marrow aspirate, labs, and lumbar puncture every three months at CHOP.  He has PT and OT every week, too.   He just got a very good report card and loves kindergarten so much. He just passed his belt test and is a green dragon now. When

After three years of waiting due to illnesses and pandemic, Naaman’s wish came true! He visited Disney World and Universal, meeting his favorite heroes (and anti-heroes).  We stayed at Give Kids the World, a resort for children with serious medical history, which is truly a dream vacation on its own. Ice cream 24/7, horseback rides, pools, life-size Candy Land, Halloween and Christmas every week, salon, character visits, rides, mini golf, fishing, and more. We will

He made it! Naaman started kindergarten. He loves the bus, school lunch, his classmates, and his teacher, Mr. Meredith (who also had Nadine three years ago). He is so motivated to learn and make friends. We are so proud of him! We are especially glad he was able to start the year with no NG tube and no Broviac IV. That’s right: he worked so hard to get both of them out before the first

In case you missed it, the first pediatric CAR-T patient has reached 10 YEARS CANCER FREE. Emily Whitehead is treated at CHOP by the same doctor as Naaman!  Her story is very similar to Naaman’s story.  She also relapsed and CAR-T was the last viable  option. She was on the Today show back in May and recently featured in People magazine. It’s an amazing story and so hopeful for Naaman’s prognosis, too. Check it out:

Nailed it He made it to six months! Naaman’s spinal fluid and bone marrow continue to show NO cancer cells, and his CAR-T (ninja) cells are still doing their job. Hooray! Yay! What’s next? Naaman should have his Broviac IV line removed on August 8. Wow!  He will need immunotherapy for the REST of his life.  It will be delivered at clinic or home, details to come once we choose the right therapy for him.

Happy Summer, officially! Naaman is enjoying his summer and is very proud to be a “kindergartener” now.  He will start at Israel Putnam in the fall, getting on the bus with his big sister! We are focused on what he can do this summer instead of the camps and places he can’t go. Therefore, he is headed to Prince and Princess Dance Camp next week, is a regular at library storytime, and can finally roll in the grass

We are excited to share that Cheeky is going four months strong since his humanized CAR-T infusion at CHOP! Other than a few viruses managed at home, he has been healthy and happy.  He has even earned his white belt and was psyched to get out on the mat with his big sister. Tigers and Dragons class at Valentin Karate Naaman is finishing out preschool year at First Congregational.  Kindergarten bound next year! He will

Naaman has been a busy guy. He has met two VERY important milestones that we are so grateful to share: NG tube… gone! Bye Bye Tubie cake (That’s an unused NG tube!) 2.  It’s 3 months post-infusion with no sign of relapse or B-cells returning. This is excellent news. Relapse can occur any time unfortunately, but data shows that six months post-infusion is a positive indicator that the treatment has worked.   Naaman went to Philadelphia