Slow to update…

Sleepy guy

A lot has been happening with Naaman, seeming to change every day or hour, for that matter. The chemo is going a good job of killing the cancer cells, but the side effects are really rough.  Leukemia cells in his left eye, aggressive diarrhea, sores and blisters on his bottom from diarrhea, another (strep-type) infection in the bloodstream, skin infections, and more that I can’t even remember.  (We use a notebook for clinic and hospital or we would never keep track.)  Naaman also has enlarged veins in his esophagus (esophageal varices) leftover from liver failure two years ago, which the radiology team found incidentally during a chest X-ray.  Those appear stable for now.  He is needing platelet and blood transfusions often, which are part of why he isn’t walking right now.  We still have him stand and encourage a few steps at least everyday, but it hurts and he doesn’t have much energy.

All this being said, we are grateful for no fungal infection and clear CSF.  Nonetheless, it feels like every time someone walks into Naaman’s room they have a new diagnosis to add to the list. What’s tricky is that things very good for one problem cause another new problem, like antibiotics for his infection help kill the infection BUT they give him diarrhea so vile that his skin breaks down.  Even the Infectious Disease team grimaced when they saw his bottom.

Once his counts recover, he will have a bone marrow biopsy to determine the next block of treatment.  The biopsy was supposed to be Friday, but will almost definitely be pushed off.

We hope to post with good news soon. He’s not on steroids this week, so here and there we see cheerful Naaman pop back up.  He’s even going to try to Zoom with his classmates today. Please keep our little guy in prayer always.

Last but not least, thank you for the visible and invisible ways you are taking care of our family.  Friends and family who have run errands, given Nadine extra attention, checked on the house… once in a while we get “secret admirer” packages in the mail. Thank you, whoever you are out there. We feel so grateful for all of Team Naaman.

Back in his old Zebra wagon!
Enjoying sun in the Healing Garden

6 thoughts on “Slow to update…”

  1. Neil and Nicole,
    Me and Yoly can’t imagine what you guys are going through there are just no words. Just know we think of guys often our hearts go out to you and we are really praying for Naaman

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