Naaman's Journal

Naaman made counts on Thursday to have his LP done and resume chemo, continuing along Cycle 6 of long-term maintenance. He’s been moody and sleepy (and hungry) this round of steroids.  This time it’s strawberries, orange juice, and pancakes!  We are grateful to avoid the hospital this weekend, and are trying so hard to keep him healthy.  Last fall-winter as a tough time for him with pneumonia and bronchiolitis, but now he has daily inhalers

A happy Cheeky Another whirlwind weekend at Smilow. Naaman was picked up early school Friday with a fever of 101 and abdominal pain. By the time he got home, he was 103 and miserable. He got straight into the clinic and started antibiotics.  Scans later that night showed an inflamed appendix, and surgery was scheduled for the morning. Plot twist… In the morning, the surgery team took one look at this happy Cheeky and decided

Good morning, Team Naaman. If anyone did not yet hear, Naaman had to be admitted yesterday to start IV antibiotics and get more disciplines checking out that infected finger. He’s been there two days, and hoping for discharge today. The great news is that the team feels it is staph or strep that got under the nail and caused infection. He is fever-free and both fingers are looking better. Derm and Infectious Disease are happy

Cheeky has hit a bump in the road with an infection. Over the weekend, two nails started bothering him, red and swollen, and he had a low grade fever. His temperature went back to normal but the nail started turning dark and it definitely was hurting him. We chatted with our oncologist and started antibiotics , but he had to go in to clinic just in case more was going on. Fortunately we did because

We’re delighted to be posting about a happy, normal milestone: back to school! Naaman and Nadine enjoyed a week back to daycare and now back to school. (Nadine called her first daycare day “the best day of my life.”) While we don’t know what’s in store for Naaman or the rest of the world, we are happy his team gave the stamp of approval for both kids to head back to school in -person.  Both

Cheeky had a tough bout with steroids this time around, complaining of leg pain, low energy, super emotions.  However, he had been crying and complaining his “mouth was gross” frequently through the days – lo and behold, he’s got thrush, likely from the inhaler. He’s got some fungal meds and we hope his mouth is less yucky soon! 

Gettin some chemo, watchin some Ant Man Naaman unexpectedly started a new round of chemo today. He has been having some scary asthma flare ups -coughing, gasping for breath, wheezing -that end as suddenly as they start. When he gets a little cold virus, anyone with asthma knows it can have a bigger impact. We were so glad to make it through the weekend without an ED visit, giving him his inhaler every four hours

Hello, Team Naaman! We hope you’re enjoying the hot humid days of summer’s (not quite) end.  Deanie and Cheeky have been practically living outside and had lots of fun with their visit from Nonni and Papa. Last weekend, Naaman had a brief stomach bug, which thankfully passed after one tough day.  And the rest of the Johnsons were spared! Koala observes Naaman at physical therapy. PT has been very helpful for Naaman, building strength and