Naaman's Journal

No news is good news, Team Naaman. Cheeky is breathing well at home and no fevers in a week! He has a telehealth appointment with respiratory in a few weeks to hopefully figure out a plan for why he keeps having respiratory events with his colds. Everyone knows how much Naaman loves the Avengers, and has been hooked on Hulk and Captain America mostly.  Iron Man has been taking over as of late, and for

Last night Naaman had another ER visit. The same story as two weeks prior: thick snot, ear/eye gunk, cough, low-grade fever all day and fever spike late in the day. We saw the same staff as two weeks ago (which is actually great because they know him and know his story by now), but this time we got away without a COVID test and oxygen. Naaman has an ear infection and still has bronchiolitis, which

Our friend Jake at Resilience Gives let Naaman and Nadine “take over” their Instagram for the day! Check them out here: IG story For any non-Gramming members of Team Naaman, don’t fret. You can still follow the link and check out Resilience Gives. Be sure to click on all the cuteness on their page. Team Reese, Team Angel and Team Emma! Enjoy. XX

It’s time we let you in on a little secret… Naaman was granted a wish! SeaWorld and Disney’s Animal Kingdom for all the penguin and animal fun a three-year old can get.  Only his wish was postponed before we could even announce it. No need to be sad (because he doesn’t even know about the wish-granting yet!) because Make-A-Wish ensured he and Nadine had a treat come right to their doorstep this week.  A parade

Today was Day 29 of Cycle 4 of long-term maintenance (but hey, who’s counting) for Naaman, which means he needed IV chemo and clearance to start up steroids and his investigational drug.  Despite hosting a few viruses, his counts were good enough to press on, and he is on track. He was even well enough to increase chemo a little (they monitor him along the way and sometimes increase or decrease doses to give him

Hello, Team Naaman, Happy Palm Sunday. This little dude kept us busy this past week.  Hopefully you all saw the update that he visited the ED last last Thursday 3/26 with a fever. He was diagnosied with bronchiolitis (respiratory virus) and also went to get tested for COVID the next day at the drive-through testing.  They’re so busy right now that even expedited testing for an immunocompromised kid took seven days. He was negative, thankfully, but we

Naaman’s cold took a turn yesterday (Thursday) and morphed into a gross cough and some green snot – and then a fever of 100.5 just before bedtime.  Hoping to avoid the war zone at Yale New Haven Hospital, we tried to negotiate with the on-call doctor, but there was no winning.  As long as he is in active chemo, he has to head to the ER for a fever over 100.4.   His nurse friends were

Hello, Team Naaman! As The Johnson Academy hosted its ribbon-cutting ceremony and launched its first week, we are a few days in delay of updates. (In case you aren’t sensing our cheekiness… we have been busy adapting to distance learning.) Last Thursday, 3/12/20, Naaman had an LP and chemo. Things went very smoothly and according to plan. What’s more, we got our chemo in and onc visit so that, sparing any surprises, we can wait