Clinic Day for Naaman

Cheeky survived clinic today and I didn’t get bit. Win win! It’s been particularly busy in clinic, which makes me feel sad that so many kids need appointments.  Needless to say, our 8:30 blood draw for 9:00 lumbar puncture became 9:30 blood draw and 10:45 lumbar puncture. He was a hangry man but we kept him distracted with all the toys they have in the playroom.  The difference today was that he woke up right away after the procedure, and he normally sleeps it off. He is supposed to lay flat for 30 minutes afterwards because they put chemo meds in his spine, so we had to hold him down while he transformed into the Hulk. When all was said and done, it was a good day, as we got to leave around 12:30.  Much better than 5:00!  Next Thursday will be the same: chemo, lumbar puncture, more chemo. Therefore we will be there longer.  

Despite his Hulk transformations, he’s charmed everyone there and the staff genuinely seems to enjoy him.  They got to see his dance moves today.  He’s adding to his language repertoire, following two step directions (i.e. pick up the truck and give it to Deanie), and he is stringing three words together (i.e. Mama coffee hot)! I’m hoping he can stay ahead, since some times language is delayed when there’s illness.  

Every Monday will be a check and transfusion when needed.  Every Thursday this month will be chemo and LP.  After we get to Day 29 (we are Day 8 today), we will know more about the schedule moving forward, which depends on his counts.  The nurse told us that after today’s treatment, counts can go down because that’s what chemo does as part of the process (Respect the Process, Bills fans!).  Nonetheless, he can still hang with healthy people (we had a play date yesterday) and go to reasonable places (i.e. grocery store in the cart, not bouncy houses).  Prayers for counts staying well enough to be home! <3

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