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This is a morning here in the Carris house. He wakes us up and we adjourn to the “green” room aka family room to the couch and Adler’s heating pad. Its turned on as his PAIN is and has always been in his buttocks along with the computer and we chose from his list of favorite YouTube channels. I get him a juice box and a juice in his sippy cup because he has his pills to take first thing in the morning and weekends he requires antibiotics to ward off a form of pneumonia that his little immune suppressed system can’t fight off. He takes an oral steroid hydrocortisone 3 times a day due to his adrenal insufficiency that was sadly caused by his misdiagnosis of arachnoiditis and the only pain med they put him on was massive amounts of pretnisone another steroid for 3 months as I relentlessly tried to find pain management calling over 35 hospitals. He ate like a machine and gained a ton of weight. Once he was diagnosed correctly and treated correctly, that weight came right off with chemo. He also takes an appetite stimulant and we give him a couple supplements. There’s also his fentynal patch for pain. Its a 25 microgram patch. Enough for a grown adult. And he uses oral morphine for break through pain which he uses about once a day. Used to be about 5 times so we upped his patch and that helped. He also has Valium to use as needed for muscle knots and well, pooping is sometimes an issue so miralax in his juice and Sena if he doesn’t go often enough. See a hydrocephalus patient and a cancer kiddo cannot get backed up!  His little body hosts disease and PAIN and lives on medication and weekly poison (chemo) to kill his cancer. We pray for shrinking and hope for stable each and every MRI. This is a morning here!!

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