Naaman's Journal

Happy Memorial Day Weekend, Team Naaman. Before you’re alarmed by the post title, rest assured this was a planned visit with the pulmonary doctor.  Cheeky’s had a string of respiratory issues from respiratory distress during sedation to these little cold viruses turning into ER trips for oxygen.  The visit went really well and the pulmonary specialist says he’s got mild asthma. All we need to do is continue his daily inhaler and follow up in a

In case you missed it, May the Fourth be with you. Leia and Han enjoyed a day of Star Wars foods and game and movies.  Why have tater tots when you can have Vader’s taters? (Yes, superfans, our Leia and Han got their own light sabers.) Chemo in clinic Thursday While Naaman has daily oral chemo at home, he still has IV chemo monthly in clinic.  Things went very smoothly and we were there just

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