Naaman's Journal

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Breakdown of an LP Day

Day 29 of Cycle 3 of long-term maintenance… but who’s counting?? Cheeky started up chemo today which includes IV meds at clinic, intrathecal (spinal) meds during his LP, and a bunch of oral meds at home.  This LP is actually a “make-up” LP that should have taken place on Day 1, but someone was still hanging out in the hospital on Day 1 getting oxygen.  And then, you know, pneumonia.  He did a great job,

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Hello, Team Naaman. Looks like Cheeky isn’t quite done with respiratory illnesses just yet. He developed a new cold and cough that was worsening. We were just in clinic yesterday for a count check (down, but no transfusion needed), but he worsened further. When we went in today, he had a nebulizer treatment and a chest Xray.  They confirmed he has bacterial pneumonia.  Luckily, he will have ten days of antibiotics and can go nebulizer

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Merry Christmas and Happy New Year!

Merry Christmas and Happy 2020, Team Naaman. We are delinquent in our holiday wishes, and delinquent in many, many thank-yous to everyone who made our Christmas extra merry. Photos with Santa at Bagelicious in North Haven was a huge hit.  The South Meriden Lions Club blessed us (and continues to) big time with a Christmas meal and gifts. Shoreline Ladies Book Club sent a wonderful surprise blessing, too, to help with bills.  We never stop

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Merry Christmas Ideas

Hi, Team Naaman.  Our little guy is still hanging in there, nasty cough, nasty boogers, but fever-free and home.  We know it’s time to be wrapping up your holiday shopping, so we thought we would give a few shout-outs.  The best part is you can shop all of these online (read: stay in your sweatpants). Resilience Gives – grab some slipper socks and know that a pair will given to a child with cancer as

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Yale New Haven Hospital Christmas Fun: All the stuff we were too sick to do last year!

Now that Cheeky’s fever has passed and counts are more stable, it’s been Christmas Party Town for the Johnsons.  Last Sunday, we went to the Tommy Fund Christmas party: Santa, presents, dancing, food, hot chocolate, and friends.  We weren’t able to attend the party last year, as Naaman was in the hospital with a fever and virus.  Cheeky and Deanie had a blast and loved seeing the doctors and their friends without hospital gowns. 🙂 

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Moving on from the first chemo hold in Maintenance

Hi, Team Naaman.  There were many cheesy ideas for a witty title to this post (think word play on “more” and “chemo” and “hold” as in “hold up”), but don’t worry; we spared you the cheese. Naaman has been on a chemo hold for a few weeks, which means his counts were too low to take his chemo meds.  He takes chemo meds daily at home, and on certain days, he gets chemo through IV

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Believe in Tomorrow

Hello, Team Naaman, and Happy Post-Election Day. Hopefully, you educated yourself and went out and voted yesterday. Check our social media for cute Mr. Naaman after we voted and visited the bake sale. CLINIC TODAY Naaman went to clinic today for a count check after his low hemoglobin and blood transfusion last Thursday.  The great news is that his hemoglobin is up to a nice 10.4 and the cultures from some serious viruses came back

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Cheeky the Penguin does Halloween in clinic

Cheeky and Deanie did Halloween in style this year. Always the opportunist, Nadine was a cheetah-cat-bird.  Naaman had a few costume changes: Naaman had an appointment in clinic for a count check on Halloween. Conveniently on Halloween, as the pediatric oncology staff really do up the holidays for the kids! Naaman started the day as SuperWhy, a throwback costume if anyone remembers Nadine a few years ago.  When we arrived at clinic, they had a

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