Lots of updates – WNY trip and keeping up with chemo

Yikes, we apologize for delay in updates. Full days at the Johnson house.  First, the happy news: we made our first trip out of town since diagnosis! We headed to Rochester, NY to visit family and friends. No one slept, everyone had fun, and no one went to the ER.  A win overall. There were children and dogs everywhere.  (And we know Naaman is a WNYer at heart, since he cried when we had to leave Wegmans.)  Edit: Sunday we attended church at The Well, where the congregation prayed over Naaman.  It is so moving and uplifting to know they have been praying for Naaman all along, too.

Small sample of our fun below…

Chemo updates

For brevity (and organization), here are the updates in order:

  • On Thursday 10/10, Naaman had his counts checked in clinic. To our surprise, counts dropped significantly.  He got a flu shot.  (Why do I need a flu shot? How do I get one?)  He was still high enough to continue his chemo meds at home, and we got the green light to travel to Rochester. Mama got a flu shot at Target, and they give you a $5 coupon!
  • What do you do if you spike a fever or encounter other warning signs (i.e. excessive bloody noses, vomit, etc.) while travelling? We had the number for Golisano Children’s Hospital ready in our phone and the address for their emergency department in our GPS.
  • Monday 10/14 while shopping at Wegmans, Naaman got a bloody nose.  Fortunately, we were already planning to leave Monday.  We got back to CT as the bloody noses dried up and he seemed okay.
  • Tuesday 10/15 Naaman whacked his head royally on the corner of the wall. A nice purple goose egg popped up of course, and off we went to clinic.  Between nose bleeds and bruising, he needed a count check to be safe.  Platelets and hemoglobin dropped, but not low enough for a transfusion.  (Let’s not forget Nadine! She went to the doctor for a cough she’s had for three weeks. It’s a bad sinus infection and she started antibiotics.  She was well enough to get a flu shot while she was there.)
  • Wednesday 10/16 We made it all the way to PT only to find out that he isn’t allowed to participate in therapy when his hemoglobin is that low! A new one for us.  His PT told us to just follow his lead for how active he wants to be. He has been playing, but less active since.
  • What’s next? Thursday 10/24, Naaman will be on Day 29 of Cycle Two of Maintenance.  That means LP and chemo, including steroids and his clinical trial drug starting back up.  All dependent, of course, on whether he makes counts.  He is scheduled to get vincristine, which is in stock in our clinic to my knowledge.  Read about the harmful vincristine shortage: here.
  • What makes his counts drop? Chemo side effects and viruses.  He’s had a cold for about two weeks, so praying no new viruses find their way in.

In other news…

Naaman finally decided to escape the confines of his crib, which means he climbs the rail and falls on the floor. The first night it happened, he ran through the house like Wee Willy Winkie.  We are in the process of switching to a big boy bed (Thanks, Rodriguez family!) and will share photos.  Until then, he is sleeping on the mattress on the floor and wakes 4-5 times per night. This too shall pass.

Thanks for ongoing love and support, #TeamNaaman!


1 thought on “Lots of updates – WNY trip and keeping up with chemo”

  1. Wow, lots of news. So glad you guys got to escape for a bit and visit friends and family. Poor baby, Vincristine made me very ill. I hope Cheeky has a much easier time with great anti-nausea drugs.
    Love to all of you!

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