Tough transition home
We were excited to come home the day after Easter, albeit with lots of homework to do. Between the injections, IV meds, and feeding pump – not to mention that Naaman can’t walk or stand – it was slated to be tough but doable. Plus, Nadine and Naaman were just so happy to be together.
Unfortunately his port was not working properly; therefore IV meds were not dispensing properly. On the positive, we had excellent home nurses come out to help and eventually just reaccess his port with a longer needle that seemed to do the trick.
Distended tummy started Sunday,
and no gas or diuretic seemed to relieve him. By Wednesday morning, he was breathing fast and not getting enough oxygen, and his belly was so big he was grunting and crying in pain. We went to the ED and he was admitted. From scans and lab work, it was gas built up causing minor blockage and infection. The chemo has wiped out his gut so gas built up that normally would not have.
Naaman came home today (Friday) with a regimen of Miralax to hopefully avoid the same build up.
And the exciting news!
Continuing traditional chemo is not the best route for treating Naaman’s relapse, as anyone can see. He is an excellent candidate for chimeric antigen receptor T cell (CAR-T cell) therapy, a relatively new type of treatment for relapse patients or patients with cancer in multiple locations. Naaman meets the criteria with cancer in the blood and eyes, and much to our relief, insurance has approved! This treatment uses his own cells to fight the cancer cells, so it’s like a transplant from yourself.
We will make a post with more detailed information about CAR-T cell therapy, but wanted to share this good news now that we know he is a candidate and that insurance has approved. Naaman will begin on 4/26, with some time inpatient and some time home. We are so grateful this treatment is available so close to home, too.
Be well, Team Naaman, and thank you as always.