Hospital Discharge!

Would you believe it if I told you Hyrum was discharged from the hospital on Thursday?! He was weaned off almost all of his medications, all his vitals had been consistently stable, and each day he showed various small improvements. Previously I imagined that he'd walk out the same way he came in... But that isn't quite the case. Is he walking? No. Is he eating regular meals? No. Is he talking? Yes, some! The hospital staff gave Michael a take home food pump and trained him to give Hyrum his ultra-nutritionally-packed liquid hospital foods. He's hooked to it while he sleeps, and blessed Michael still gets up consistently in the middle of the night to switch out the bag and keep things running. 

We've returned to the Ronald McDonald House and spent some really beautiful hours together. The kids played Keepy Uppy together with balloons, just like they used to. We walked the tree-lined trail together and threw autumn leaves in the air. We loaded into the car and visited a new playground, where Hyrum took his first *assisted* steps since his infusion. My sweet cousin planned a surprise birthday party for Emily when she heard I'd spent my extra time finding/buying/cleaning a jogging stroller for Hyrum to use. We eat dinner outside and watch cartoons in the morning and dosee-do around each other in our one-room space. 

Hyrum is in an MRI now, and will recover for another two weeks before his second infusion. They'll give him 30 million T-cells instead of 100 to ensure that there isn't another bleed. (Those happen in 25% of DIPG tumors anyway... regardless of infusion. They're still not sure exactly what caused it, but we're proceeding with caution anyway.) We'll work out way up from applesauce and soft, dissolvable foods as much as we can, and Hyrum will keep pushing his own physical boundaries. After all, it was his idea to get up and start climbing things at the playground! 

We are grateful for the truly spectacular people here who are working so hard to make us feel loved and safe. Hyrum's medical team, who have attended to him with incredible detail, compassion, and concern. My aunt, uncle, cousin, who regularly open their home and their lives to our mess. Many new church friends, who have offered us food and time and activities to share in. Our Ronald McDonald friends, who share their breakfast sausages, swap hospital stories with me while we wash dishes, and smile at my kids. 

Did I mention that we met another DIPG family? Their 4-year old daughter is about a month behind Hyrum in the CAR-T trial, and I saw them eating dinner the day after she had her OMMAYA placed. I immediately knew what it was, and we began to talk. They're our regular dinner buddies now, and it's deeply comforting to be with people who have walked a path so similar to ours. They're really incredible people. 

Still feeling all the feels, running regularly, and journaling like crazy. I'm leaning more and more into my conversation skills- learning to drop the phrase "terminal brain cancer" less painfully and share my random, pressing thoughts with supportive listeners, regardless of if a specific question was asked about it. Where did I ever get the idea that I had to wait for a point-blank question to talk about something? How was anyone ever going to know what to ask me, anyway?! There is a LOT of good use for listening and polite self-restraint, but goodness, I took that much too far. So I'm working on it. 

Speaking of that, I have nothing else profound to share except another Andy Grammar song, Working On It. Have some jam, ya'll.