Naaman's Journal

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

Sleepy guy A lot has been happening with Naaman, seeming to change every day or hour, for that matter. The chemo is going a good job of killing the cancer cells, but the side effects are really rough.  Leukemia cells in his left eye, aggressive diarrhea, sores and blisters on his bottom from diarrhea, another (strep-type) infection in the bloodstream, skin infections, and more that I can’t even remember.  (We use a notebook for clinic

Naaman is having a rough start to treatment for relapse. The first time it was called “induction,” and “re-induction” is uglier. Transfusions for low hemoglobin and platelets, delays in treatment to heal, and wiped out immune system. His hair already fell back out. This is the fourth time. He can hardly stand, and can sometimes take a few steps because it hurts. He has sores (mucositis) in his mouth already. Therefore, he won’t eat. All

Thank you everyone for sending well- wishes and praying hard for Cheeky. He has been very busy this past week admitted at Smilow. Tired, emotional, and in pain from the treatment. He has tiny windows of time when he wants to play a little or get out of bed, but he really just feels too awful to do anything but snuggle in bed or be held right now.  What happened? Naaman has a CNS (central

There’s unfortunately no way to break the news gently: Naaman has had a CNS relapse and will be starting a new treatment.  His spinal fluid tests from Thursday came back showing leukemia cells in his spinal fluid, which has been clear for close to two years.   What happens now? Naaman went to clinic today for a bone marrow sample, which did not go well for respiratory issues. He went to the PICU to recharge, and