Naaman's Journal

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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

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Third Annual Trucks for Charity

Phew. Holy smokes, Team Naaman. Today was an awesome day!  We were blessed to be a part of the third annual Trucks for Charity (TFC3) hosted at New Life Church by Matt and Hannah Hazelwood, Kyle Pelletier, and Brittany DiFusco.  The day started out frosty but warmed up quickly, and the lot was packed! We made it through the day without crying our eyeballs off in front of everyone (maybe just in the port-o-potty and

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Belated chemo update

We made it. Cycle Two of Long-term Maintenance! Phew. Last Thursday, Naaman made counts to begin this next round which included IV chemo and also intrathecal (into spine) chemo.  Before the IV chemo and LP, they also noticed his blood sugar was down to 50 so they gave him some sugars to get back up to 90. He has had a cold, and was already “off” the day before but he usually doesn’t have low

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Team Naaman Shield Gear is now an online store!

Quick read: Bonfire now has an online store for Team Naaman Shield gear! Visit www.bonfire.com/store/teamnaaman. We now carry children’s sizes (although not baby sizes). There’s no deadline, just order away! We are honored and touched by the requests for Shield gear! Thank you everyone for your love and support. We use the site Bonfire for the apparel, and they have a cool feature that once you know your items will be in demand (sell a

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Tribute to Pancho Billa

While not all Team Naaman followers are fans of the Buffalo Bills, everyone can stand behind the legacy of Buffalo Bills superfan, Ezra “Pancho Billa” Castro.  I apologize in advance that I won’t do his story justice, and I recommend checking out his page in the links below.  Cool dude, loving father, and devoted fan.  Pancho was also diagnosed with cancer, and became a sort of penpal and super hero to Naaman.  During hospital stays,

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The Amazing Spider-Man!

  Look who showed up at our house! Nadine and Naaman were in awe when they saw the one and only real Spider-Man walk out onto our patio! Nadine took a gazillion pictures with her Instax mini camera  (like a Polaroid) and filled up her album, even sharing one with Spidey.  They were beside themselves! Naaman sobbed, “Spidey come back,” when it was finally time for Spider-Man to return to duty. Grown-ups only, read on. 

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Closer to Free Ride/Quick Clinic Check

  A quick visit to the clinic today to check on Mr. Naaman’s liver.  He had a big belly for a few days that wouldn’t go down after time to digest food or a BM.  Since that can be a red flag for enlarged liver, we went in for a check.  Everything looks safe and good, so we were able to go play in the Healing Garden with some inpatient friends and head home. Luckily

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‘Roiding on

Naaman is rounding out another steroid pulse, and the rest of us are looking forward to it passing.  We are trying to stay focused on one day (or rather simply the next five minutes) at a time, because thinking of these steroid pulses repeating until end of treatment makes us want to hide in the basement.  Fortunately, he’s been a good little guy when friends have come over and in his class at Kid Church

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