Naaman's Journal

Naaman is getting a new port tomorrow. He had an internal port, which was just removed due to infection.  The internal port required a needle access each time it was used, and also was a single lumen, meaning just one line of meds/fluid/chemo could go in at one time.   Now that we’re high-rollers in relapse, we get a Broviac external port.  There’s a nice description of the Broviac here. Pros: It’s always accessed so one less

Surprise surgery this afternoon. Naaman had to have his port removed and is using two IVs (one in each hand) for now. Naaman’s infection turned out to be a staph infection (MSSA) which he’s had quite recently before.  Unfortunately the infection lingered in his port which can happen sometimes with those super bug-type infections, even when all blood cultures show it’s gone. Once we are certain the infection is truly gone and he is otherwise

Three days inpatient and CAR-T collection is done. Naaman’s numbers were lower than they wanted by Monday, but the team felt proceeding with collection was more important than the risk of waiting. As predicted, Monday he had surgery to put the big line in and Tuesday and Wednesday were collection days.Naaman couldn’t move much with the big line in his neck, and collection takes about four hours each sitting. Somehow he was in pretty good

Naaman made counts and is slated to begin CAR-T cell therapy Monday! We won’t go to great lengths explaining CAR-T cell here, but this is an excellent resource: NIH CAR-T cell therapy engineers the patient’s immune cells to fight their own cancer.  T-cells from Naaman are collected, taken to a lab in New Jersey called Novartis, trained to fight his cancer, and placed backed inside of him.  That’s why it’s considered a transplant; it’s just a

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,

Cuter than any droid I’ve met Happy Passover and Happy Easter! Naaman will spend Easter at Smilow, but that won’t stop him from partying down. His counts have been trending up and that means he is more in the mood to go for walks in the stroller and play Legos and craft. It also means he is ready to think about coming home. He’ll come home with some new stuff… NG tube for feeding IV

Last Saturday on March 20 everything was slowly moving along towards what looked like us going home soon. Then on Sunday night after an CT scan revealed two clots in Naaman’s liver and intestines, everything changed.  Blood clots Naaman was moved to the ICU to immediately on Sunday the 21st to begin treatment with Heparin to thin his blood and  begin to break up the clots. This became a delicate balance because of his low

Hello, Team Naaman. Thursday was a big day for Naaman. He didn’t have high enough counts for the necessary bone narrow biopsy to check for leukemia cells, but we had to press on to determine what is next for treatment.  His team worked very hard to make MANY things happen under one sedation:  Bone marrow biopsy Intrathecal (Spinal) chemo Bronchoalvolar lavage (BAL) to check nodules Eye exam to check lesions Skin biopsy to check dark