06/26/2024
It’s been a while since I updated everyone so I figured I better hop on here since I was thinking about it.
Jax has been having a great summer so far and enjoying all the things he wasn’t able to do last summer. We all still can’t wait until treatment is over and he gets his port out so he can enjoy swimming in the ocean, going to the lake and being able to do hotel and water park pools again…but until then we get to be thankful for Nana and Papa’s pool.
Today was a long almost 8 hour clinic day but boy is he a rockstar. He sits all by himself to get his port accessed with a 3/4” needle poked into his chest and doesn’t even flinch!!! To think it used to take 4 of us to hold him down.
He received his monthly dose of pentamidine, iv chemo, iv immunoglobulin and we went home with a script of antibiotics because what we have been thinking is allergies is now possibly a sinus infection. We were supposed to be increasing his daily chemo amount today but because he is fighting off infection they want to wait until he’s done with the antibiotics. He will have to take a medication to help protect his liver with the increase of daily chemo because he also has Gilbert syndrome and the chemo causes him to have increased chance of damage to his liver. This other medication has the risk of causing his counts to plummet and increasing our chance of an unwanted hospital stay. We will enjoy our next month of not having that chance and pray next month the increase goes smoothly.
Jax will be having a lemonade stand and bake sale with all profits going to St Jude for one of his bestie Amy’s run. Monaris Chili dogs has also agreed to set up that day. The event will be in front of Snips Hair Studio on Friday July 12th. Please come see Jax and support St Jude👣❤️👣
