At last, Naaman’s doctors gave the green light for school. Naaman is elated to get back to the Red Room with his favorite teachers. Some of his besties from last year are even in his class again. We love First Congregational and are so happy they kept a spot for Cheeky. Naaman went there last year from September until his relapse in February. Nadine also went there – and so did Neil and his sister, Meagan!
Until now, it wasn’t safe to send him back. His CAR-T protocol (treatment last summer) required him home, and then when he was slated for BMT, he also needed to be home for precautions. Even a cold virus was too dangerous. While it’s still imperative he remain healthy for humanized CAR-T, his levels are stable enough that he can be with the class with some changes.
He will attend a three half-days to get home for a bolus (tube-feed). We kept his short NG tube so that the mask mostly covers it, instead of the longer one that coils in the Tubie Pocket pinned to his shirt. We also had a TON of trial and error to find a vest for under his shirt to contain his Broviac lines. Between sewing some prototypes and ordering bespoke IV vests on Etsy from England (true story), his lines are secure under the vest.
His school already has protocols in place anyway that are great for him: masks, hand-washing, personal space, and lots of outdoor time. He still has clinic appointments and therapies, but he will get to school as much as he can. Of course, in a little over a month he will have to leave for CHOP, but after his six week stay, he should be cleared to return to school.
You may be wondering how Naaman took the news. There were some tears and “But I’ll miss my dad;” however once he visited the school, he joined his classmates and didn’t want to leave. We are so excited!