Long week for Naaman

Cheeky had a full week of appointments.

Wednesday – Well child visit at the pediatrician. Tested negative for lead. (That counts for something!)

Thursday – planned LP for intrathecal methotrexate (goes into his spine), but platelets were too low to proceed. All that fasting and an early morning for nothing! Went right up to clinic for a double dose of platelets and IV chemo.

Friday – LP in the OR successful this time. Home by noon for an injection of chemo from the home nurse.

Before:

After:

The doctor warned us that platelets don’t last very long, so extra attention and care must be taken this weekend in case he doesn’t last until Monday. Bloody nose, rash, etc might be signs he’s run low again. Cheeky is  certainly not feeling well, but so far no fevers or other strong signs of low platelets. There’s a lot of whining and crying and yelling, and a lot less sleeping. (Un)fortunately Cousin Joe got stranded in CT so we have some good company and a great distraction!

What’s next?

  • Another injection tomorrow at home and that should be the end of injections for a while.
  • Monday clinic to check if he needs a transfusion.
  • Thursday clinic for IV chemo.
  • The next LP is scheduled for 3/28, platelets depending.  The team wants to try his next LP in outpatient again, which is a less stressful setting, but can mean a lot more waking hours fasting so an unhappy Naaman. I’m exhausted of the OR at the moment, with the 6:30 a.m. OR check-in and new staff each procedure.  Naaman has had it with his little yellow hospital suit. So hopefully outpatient will be easier again!

Keep our little guy in your prayers! It’s been a while since we have needed a transfusion that we forgot how scary it is to constantly wonder if his counts are about to plummet. Off to check that my emergency “go” bag for the ER is up to date!

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