Snowpocalypse 2019

Hope everyone is surviving “Snowpocalypse 2019” (Snowmaggedon, if you prefer). We fortunately did not lose power, and were mostly just cooped up to avoid the extreme cold. The kids love playing at home so much that it was more mentally taxing to us than them… and here we are, ready to start Delayed Intensification 1.

Cheeky went in for an echocardiogram today, just a “check up” really to be sure his heart still looks healthy (it does). He also had a blood draw to check his counts to start tomorrow. (If he didn’t make counts, it would have saved us fasting after midnight and coming in tomorrow morning only to be sent home. It was actually quite considerate of them to do that for us.)

Cheeky made counts, meaning platelets and ANC both were high enough. Tomorrow he will start Delayed Intensification 1 (DI1) , which entails 29 days of many drugs, but all familiar old friends he has taken before. He will start the day at 6:30 a.m. in the OR for his lumbar puncture (LP). After LP, he will get a PK, a special blood draw they will check throughout the day periodically to be sure he’s still okay. After that, it’s chemo, play and eat. Maybe eat first, because he will be a cranky starved beast by then. We will be in clinic for the full day, hopefully home around dinnertime.

The meds he is starting back up are not fan favorites: ruxilitinib (clinic trial), dexamethosone, etc. We can use some prayer for Cheeky to stay strong enough to tolerate them by mouth, and to keep eating, in order to avoid the NG tube again. The steroids will likely keep him eating, but it’s anyone guess how he will respond to the cocktail of everything. Every person responds differently to treatment, so do us, and yourself, a favor and don’t Google these meds and phases!

It’s a little early, but we can say one thing with certainty: the Bills won’t be losing the Superbowl this year. Much love, Team Naaman.

Put your hair in the air!

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