Cancer, Coping, and the Every-Day Maces

Near the beginning of May, a robin began frequenting our back porch light. She was nesting, despite our many ins and outs! Fascinated, we watched her bring countless twigs, only to have them fall to the ground. I waited for her to select a different location, but she was persistent. She labored ALL day, for 3 FULL DAYS. Wow. She was so determined. I couldn't resist - I bent a wire hanger around the porch light to add some extra structure for her. Within 3 hours, she built a complete nest! We've watched her sit on her eggs, then with delight, we noticed 4 tiny beaks springing up for food. Those little birds grow quickly!! We can hear their tiny chirps when we walk outside, and mama robin goes about her business without minding us.  Then today. The rest of the family was occupied, and I took Dash outside one more time before church. He stopped following me, and when I looked back, I noticed something in his mouth. It was one of the robin babies - it had fallen from the nest and w...

It's hard to believe, but Hyrum's last day of radiation was this week! I'll always remember radiation so fondly. His team of doctors and technicians was beyond excellent - they made him happy to be there. This last day, they told us they had planned a party, so we brought the whole family! We arrived early and wandered the "outdoor recess". As I watched Hyrum giggle and chase his brother around the fountain, the change in him was SO obvious. Those first weeks, we rolled a quiet Hyrum into treatment on a wheelchair. Now, he plays through a whole day without napping. He is friends with Caleb again. He walks without stumbling most of the time, he only vomits once a week, and his vision isn't really bothering him. Radiation really brought him back to life.  When Hyrum came out of his last treatment, the first thing he saw was a REAL, LIVE SPIDERMAN waiting to congratulate him. Hyrum was beaming - it was like no one else was in the room but him and Spidey. Spiderma...

The writer slice of me would like each of these blog posts to be cohesive... but that's just not gonna work sometimes. This scattered post will include thoughts about: emotion-packed moments, inclusive statements, conversation questions, and why God is not like chocolate ice cream.  1. Emotion Packed Moments.  We attended Hyrum's Pre-K graduation on Friday. Poor guy feels it deeply when he can tell he's not the self he used to be, so he stayed on Dad's lap and watched. It hurt seeing other smiling, singing kids and feeling like Hyrum should have been up there bouncing with them. Michael cried in the hallway, feeling the weight of a Pre-K ceremony that has to represent every other graduation we should have had with him.  We also attended a baptism! We want our kids to have as many covenant moments as they can, and this one was great because both families involved are our dear friends. I wasn't anticipating so many feelings... but I definitely cried through most of it...

Medical update: Hyrum has only 9 more radiation treatments left. I'm not sure how that's possible, because they just started yesterday?! We met with our neuro-oncologist and are deciding between two clinical trials. Both are a variant of the ONC drug: it's orally administered, has almost no side effects, and has shown some efficacy in extending life for several additional months. (That's a BIG deal with DIPG, ya'll.) We're so glad to have two really good options, and we'll learn more about the two trials when we Zoom with the Utah oncologists who are involved with both.  The other breaking news? All our doggie dreams came true this week! Dash is a mini goldendoodle. He's incredibly patient, intelligent, and easy to play with. He's slept very well here, and the kids love him. Michael would say that Hyrum loves him quietly, while Caleb and Emily love him loudly lol Most of our work this week was training the kids how to own a dog. Potty training is als...

Well, it’s been a MONTH!!  And we’re all okay. We have cried and mourned and changed a lot since Hyrum’s diagnosis. This week, however? Felt surprisingly uneventful. Hyrum is settling into his new self. Fewer angry outbursts and more comfort in new routines (drawing, weeding, radiation, puzzles, shows, walks, hide and seek). Caleb is learning how to play quiet games with Hyrum. He speaks for himself more often and has matured immensely. Emily is spunky and strong and tender. She still wrestles with Hyrum every night. I think it's really sunk in for Michael and me. We've had SO much support from friends, family, and unseen angels. Our souls have stretched beyond the point of recognition, but we're starting to see little flickers of familiarity. Winco shopping. Walks to Bumpass Park. Marco Polos with friends. Cleaning, vacuuming, laundry. Porch sits. Watching the rain. I can feel myself slowly pulling back together.  There are still plenty of reasons to laugh (i.e. Caleb pret...

 Sometime last week, I found myself sitting in the corner of our back yard, pulling weeds. The boys were in bed and Emily was enjoying some last outdoor moments before her bedtime. I started crying, and Emily wandered over to my corner. "Eye, eye, eye!", she said repeatedly. "Yes, I'm crying. I'm just feeling sad." She wiggled her way between my legs and wrapper her arms around my neck. After a moment, she pulled away, looked me in the eyes, and babbled distinctly and soberly. I replied, "It's just so hard to watch..." She hugged me again, then backed up again to see my eyes. She spoke to me again. She listened to whatever little thing I said. Hugged me again. Backed up again. Hugged me again. Spoke to me again. Listened to me. Hugged me again.  She did that maybe 12 times.  For good measure, after that she threw in a game of peek-a-boo and the song "Slippery Fish" to cheer me up. It was one of the most pure, remarkable experiences I...

It always surprises me how a day can hold SO much. Thursday morning was beautiful - we read books, watched the rain and jumped in puddles. On the other hand, Thursday night was my hardest since diagnosis. I knew, when I heard about it then, that I would have to watch Hyrum break. I didn't know that I would have to watch Caleb break, too.  Hyrum's medications and this overall emotional roller coaster have resulted in some aggression. Sometimes he gets angry, hits, yells... things he never used to do. Caleb (his 3-year-old brother) has been a recipient of it several times. Thursday night, Michael had inspired conversations with each of them individually, then helped them talk to each other about these excruciating 4 weeks. It was a real, raw, powerful moment when they expressed feelings and apologized to each other - even a hug (which are very rare from Hyrum these days.) That night... a big cry for me. Caleb is at no fault here, but his best friend is suddenly distant and angry....