Cheeky has made it to the maintenance phase, which is cause for celebration as a lot of the high-dose “heavy-duty” meds are behind him. Hooray! Nonetheless, he still has a long road ahead of him. Two or three more years still ahead. He starts a new regimen of chemo with maintenance, although nothing he hasn’t had before. Doses and frequency change. He still has continuous feeds with “Foxy” (his pump), and still has to take the same precautions he has been. We were just trying to plan a get-together with friends and we are thinking, “Okay, avoid the sun, avoid germs, avoid getting his face wet…” Sounds like a big limit on summer fun. While it’s a hindrance, Naaman is still determined to enjoy his summer of being two years old. He loves the water table on our patio, running around the yard with Deanie, and chasing bunnies from our gardens.
Today for Day One of maintenance, he had a lumbar puncture and started up new meds, including steroids and the clinical trial drug. He’s pretty sleepy, but he will rest up and be ready to hop on his scooter in his signature vintage red, white and blue Hush Puppy overalls in time for the festivities tomorrow. Happy Independence Day, Team Naaman! Here is a throwback to last Fourth of July: