Cancer, Coping, and the Every-Day Maces

Here I am, living the Utah life, with raspberries to pick and trampolines to jump and so many wonderful people to be with. The beautiful fall vibes keep me out in random corners of my parents' yard most of the day- on the old wooden bench, talking on the phone with Michael. Laying on the grass, journaling in the sun. Under the apple trees with Caleb, teaching him how to climb.  Hyrum and Michael are hanging in there. A "fast MRI" revealed that sometime in the last 2-3 days, his tumor/brain started and stopped bleeding for a short period of time. The excess blood is hanging around, waiting to be absorbed again. It's another complication... But we think things are fine?? Hyrum isn't talking or eating much. NG tube is nourishing him for now. But hypothetically with more rest and time to recover from the tumor's inflammation, the blood won't do much more damage than it already has. We think? I was doing such a good job staying calm about Hyrum's treatment,...

Hyrum received his first CAR-T cell infusion! He's still recovering from it (fever, fatigue, vomiting, tumor inflammation, and more) and he will be for a while. Michael is incredible- he's constantly monitoring Hyrum's developments, working with the medical team, sending updates to me and the family, and surviving on very little sleep. I'm in awe of him.  Contrary to our original plan, the kids and I are back in Utah. Wondering why? 3 days after arriving in California, Michael and I discussed my increased/prolonged/constant sadness over the past few weeks. Questioned if I might be depressed, need therapy, medication, a move back to UT, etc. Unlike April-July times, with extreme moments of pain and regular moments of peace/contentment/some normal happiness, I've just felt so gray recently. All the time.  The day after that conversation, we drove to our California church building for the first time. Soon after we arrived, I started cramping. I'd been bleeding ligh...

Hyrum received his first CAR-T cell infusion! He's still recovering from it (fever, fatigue, vomiting, tumor inflammation, and more) and he will be for a while. Michael is incredible- he's constantly monitoring Hyrum's developments, working with the medical team, sending updates to me and the family, and surviving on very little sleep. I'm in awe of him.  Contrary to our original plan, the kids and I are back in Utah. Wondering why? 3 days after arriving in California, Michael and I discussed my increased/prolonged/constant sadness over the past few weeks. Questioned if I might be depressed, need therapy, medication, a move back to UT, etc. Unlike April-July times, with extreme moments of pain and regular moments of peace/contentment/some normal happiness, I've just felt so gray recently. All the time.  The day after that conversation, we drove to our California church building for the first time. Soon after we arrived, I started cramping. I'd been bleeding ligh...

Here's a little more detail surrounding our next baby Mace. We're so happy to share news and chat about anything written here on the blog, but I do want to acknowledge that just because I'm happy to talk about this does not mean that pregnancy, fertility, or family planning is a topic that everyone wants to discuss. Some of my favorite people have mourned their unexpected fertility journey, and it's a topic for extra gentleness, careful conversations, and no assumptions. Having another child around this time was always in our plans. Cancer was not. Obviously, cancer has changed many of our plans, and we revisited this specific plan sometime in the month after Hyrum's diagnosis. "Is now still a good time to have another baby?" "How could I possibly handle this AND being pregnant?" "What if the baby comes before Hyrum goes? What if it comes after?"  About a year ago, I was settling into bed after a long day at home. In my mind, I started ...

It's *relatively* calm moments like these when I forget what this blog is actually about... And wonder why some of you sweet friends are still reading? I don't always have a concrete cancer update to give, and I guess that's alright. I guess if I can put words to some of this strange experience, and if you take the time to read them, it's one way you volunteer to be with me. It's one reminder for me that I'm not alone. And it helps. That said, this is usually a strange, raw, emotional monologue, and no one actually needs more of that in their lives lol My apologies and gratitude to you brave souls. Below I've included an August 24 transcript from my cheap spiral bound notebook. It's half "summary of an ultra-breakdown" and half "therapeutic musing while I put myself back together". Since breakdown, I'm trying to do the "live gently, feel deeply" phase where I expect less from me, try to talk about the feels, and consciou...

I was reading Psalms this week and found myself thinking, "These are SO personal- such an investment of soul from the author to God. I wonder what my current psalm would be."  Articulating my desires and requests in prayers/in general has been really difficult (because when you can't want basic safety for your children, what else is there?) It's nice to have a few words that feel genuine. Oh Lord, maker of medicine and healer of homes, Breathe gently on the shards of what we’ve been. From ashes, hot with grief, make way for us to live again. My sad and sober soul, adrift, alone in seas of change, has, in the darkness, seen the stars- Our genesis, our end. I thank thee, Lord, for teaching me through sufferings of my past. Once made to bend, now I can mend this wound, my great and last. My heart, subdued, does not desire a different fate than ours. I only ask the strength to feel. and access to thy powers. I hear your call to show the tender canvas of my soul, Oh give m...

After a "Can you get here in two weeks?" notice from Stanford, we started making phone calls. Family graciously adapted their plans so we'd still have somewhere to stay, and Oklahoma friends jumped in to help us prepare our house. Almost every day, I had 2-3 friends over- one to take my kids out on a fun morning outing, another to help me pack/clean in the morning, and another to help pack/clean in the evening after bedtime. I honestly can't wrap my head around how MUCH our people did for us- both in these short weeks and the months before. They loved us tenderly and tirelessly, and it is one of the most humbling and beautiful things I've ever experienced.  We had a huge goodbye party with church friends (who knew our house could hold 48 people?) and a goodbye swim party with neighbors. Friends brought us road trip snacks and activities, and our sweet neighbor made us amazing, individually wrapped quesadillas and joined with another family to wake up at 2:00 am to...