Cancer, Coping, and the Every-Day Maces

We're still here! Hyrum doesn't walk or crawl much anymore. He can sit unassisted for a few minutes at a time, then needs to lay down again. His head LOOKS heavy, swinging side to side sometimes as his neck struggles to hold it. We're thickening his fluids to help with swallowing, chopping soft foods to small sizes, and starting to abstain from hard foods like crackers. He speaks less and less. He still does occasional outings with us- sacrament meeting, swimming at the Provo Rec Center, ice skating. Alternative therapy, you know? We play board games, watch Bluey, eat jello, play pretend.  One of our recurring games is "Royalty", where King Hyrum lays on his pillow throne, and his two pet cats (Caleb and Emily) fawn over him while the adults fetch requested items. Out-of-state cousins came to visit this weekend, and they even made special scanner badges that allowed entry into the throne room. The game seems to have blurred into our reality... the other day Hyrum ...

I posted that last blog update, not because I really had anything inspiring to say, but because I knew that if I left myself a whole "last week of life" post to write, it'd be WAY too big and overwhelming and messy, and I'd hate writing it. After posting that unpolished journal update, I slept hard and woke up to many kind messages from friends. The view downstairs was even more surprising- Hyrum was on the living room couch, watching a show. He waved and greeted me, then asked for breakfast. Um... what. To my absolute surprise, the whole day was like that. And today. Not quite as strong as before, but NOTHING like Friday. He is swallowing again. Drinking liquids again. Eating food again. That "less than a week" timeline, (which is real, if he isn't able to eat and drink) has suddenly disappeared. And honestly? I can't quite figure out what happened. Here's my best guess: angels and prayers. Friday night, while I was up sleeping with Caleb, Mich...

A journal excerpt: "Today I went on a morning winter walk with a friend. We had a great chat and endured some wicked winter wind! When I came home, I saw a text from Michael that said "Hyrum had a big change last night." And he was right. Yesterday, Hyrum was crawling. Walking with some assistance. Eating normally. Today, he barely rolled out of bed. His speech is much more slurred. He can hardly swallow or chew. I spent a calm morning watching Avatar with him while McKay crafted a brilliant in-bed iPad stand out of cardboard boxes. The afternoon got messier as I tried to arrange hospice, cancel future doctor appointments, etc. Lots of phone calls. Eventually the hospice nurse came, along with the clerical guy. We sat down to chat with them, but the nurse skipped all the useful questions and went right to advice giving, telling us exactly how to talk to our other kids about Hyrum's death and explaining that when they're teenagers they'll need counseling... Th...

Sweet friends. In a recent conversation with one of you, I realized that my last two blog post were all emotional and not very informational lol I never gave an update from Hyrum's big mid-december MRI! This might have something to do with the fact that after all its hype, it didn't feel very monumental. It was basically a "Well, it hasn't decreased in size. These two new areas are noticeable but right now we can't tell if its inflammation (just part of treatment) or tumor growth." Because his walking, talking, eating, and overall symptoms still looked good, we planned to continue treatments.  About a week after that MRI, Hyrum's walking became more unsteady. His energy was a little less. Drinking water is harder than before.  His hearing seemed less also, (though an audiology exam confirmed that these recent hearing issues are just fatigue and not neurological.) Michael and I discussed plans for the January 9 infusion, and surprisingly, I felt very good a...