Naaman's Journal

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

 Quick update on Mr. Naaman: count check on Thursday looked good. Not amazing numbers but all happy enough to not need a chemo hold or require transfusion. We’ll take it! He’s hard at work with PT and OT. Last Thursday, he had both therapies and clinic, so he was like Jell-O and did not fight climbing in the stroller.  Overall, doing well and we are grateful. Stay warm and well, Team Naaman!

Naaman has to lay flat for 30 minutes after the LP to avoid a headache. Answered prayers from Naaman’s LP last Thursday: all labs show there are no cancer cells in the spinal fluid. Amen! Initially, they saw WBC (white blood cells) in the sample again, but we waited until they sent for additional testing before posting here. We hoped for better results and we got them. The WBC must mean he has a cold

In case you missed it, Naaman and Resilience Gives were featured on News 8 last Wednesday!  Here is a link to watch: News 8 Naaman loved the interview and talked their ears off.  Thanks to everyone who tuned in, sent us messages and/or shared the story on social media! We ♥ Team Naaman! Another LP attempt tomorrow. So far his COVID test was negative and we are on schedule with his LP tomorrow (Thursday).  He has

Naaman was supposed to have another LP Wednesday to check up on some elevated WBC in his last LP –  but it was postponed until next month. He had a negative COVID test but he had diarrhea and a cough, and wasn’t worth the risk of sedation, given all of his respiratory issues.  He usually needs oxygen and has had some adverse respiratory events while sedated, so the risk of sedation for the LP did

Happy Chanuka, friends! We just made some yummy latkes in honor of our friends celebrating this week. How do you prefer your latkes? Nadine prefers applesauce, Neil likes sour cream, Nicole likes any topping, and Naaman only eats potatoes shaped like dinosaurs from Aldi. Unexpectedly… Next Thursday Naaman will need another LP, which was not planned. The last LP showed increased white blood cells in his spinal fluid.  We aren’t sure why, but hope it’s

It’s the most wonderful time of year again. We feel so blessed for a healthier December, and hopefully it stays that way. Naaman has a funny trick of spiking a fever to hang in the hospital and get discharged Christmas Eve. Praying to not repeat that for the third year in the row. Cheeky and Deanie Many of you reading this are in need of support this year, and many of you reading this are