Dash, Laughs, and Cries

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 also in process, but 6 years of little human diapers have blessed us with an extremely high tolerance for fecal mess. This is NOTHING compared to people poop, ya'll. 

Here's a more individual snapshot of what we're each experiencing on an average day: 

Erica's Recent Cry: I walked with Caleb and Emily to the library today. On our way we passed a young mom in an identical scenario: 3-year-old on a balance bike, 1-year old in the stroller, out on morning stroll. We stopped to talk, and she had a great vibe about her. We exchanged phone numbers to play at the local park sometime. I'm excited to get to know her sometime soon, but immediately felt a pang of sadness about it. Later in my kitchen, I cried two little tears for all the people I'll meet in my life that will never know Hyrum personally, and all the others that will never even know that he's a part of our family. 

Erica's Recent Laugh: Recognizing my need for morning structure, I've organized morning walks with a lovely neighbor. It's been fabulous. One morning, we opted for backyard water aerobics in her pool instead of the walk. I marched down the street in my swimsuit at 7:00 a.m. and jumped in with only negligible moaning about the chill. With foam weights in hand, we attempted to follow a YouTube video, but WHO KNEW that basic exercise moves would be so complex in the water?! Our inexperience was hilarious, and the giggles were as refreshing as the water. On the walk home, I basked in the exciting, too-rare feeling of being an adult and trying something totally new.

Most Time Spent: Assessing family needs, adding structure to the day with child-specific activities and outings, feeding people, picking up cups, stealing quiet moments for decompression, praying, regulating personal emotions, regulating childrens' emotions, recognizing the good things to be grateful for. 

Michael's Recent Cry: Less about the tears recently, and more about exhaustion. "I'm tired." And also "My cry is that I have to help my wife cry to help her feel better." lolllll He's still carrying all of us in emotional and physical ways.

Michael's Recent Laugh: During each commute to radiation, Hyrum talks on the phone with a cousin or family member. Michael listened to Hyrum talk with his cousin about the new Disney+ show, Spidey and His Amazing Friends. William started giving a play-by-play of a recent episode, and Hyrum excitedly retold the ending. They laughed about it together and Mike shared the moment. 

 

Most Time Spent: Giving attention to whoever needs it most, working, picking up messes, comforting his wife, communicating with friends/family, doing high council tasks, fixing house things, praying, and making life fun.

Hyrum's Recent Cry: Was feeling frustrated that I asked him to put away the books before watching a show. Also frustrated that I was spending time helping Caleb clean the family room. Asked me to come help him, so I sat with him and started shelving. There was one particular book that Hyrum wouldn't replace. I asked him one more time, and he started to tear up. I put the book away and softly told him, "You seem frustrated. It's okay to have a hard time. You're a great guy." Three or four little tears fell. I got up and left, because he needs space to process and deescalate himself after those moments. After a moment, he joined us happily to watch the movie. 

Hyrum's Recent Laugh: Pushing Mom and Dad into the pool and squirting Mom and Dad with a water gun. 

Most Time Spent: Drawing, weeding the back lawn, watching movies, playing cars, taking care of Dash, traveling to and from radiation, resting, swimming, examining the tooth he just lost, blowing up balloons and letting them fly around the house... 

Caleb's Recent Cry: When Mom wouldn't let him watch a second movie

Caleb's Recent Laugh: The boys were upstairs on Mother's Day, drawing a surprise for me. Periodically they would send someone down to make sure I was still "distracted". Daddy chatted with me, Hyrum slyly suggested "Don't you need to send some messages, Mom?"... but Caleb. When it was his turn, he crab-walked sideways into the room, pinching his little fingers together repeatedly. "It's just a SHINY!!" He shouted, before running back upstairs. By "shiny", he means crab... But like the song from Moana. Diversions don't get much better than that!! It was ABSOLUTELY hysterical. 

Most Time Spent: sucking his fingers, imagining he is riding a hippo, making inanimate objects speak to each other, watching movies, trying so hard to be gentle with Dash, riding his balance bike, playing at the park. 

Emily's Recent Cry: After bedtime, when we took longer than 5 minutes to come change her poopy diaper

Emily's Recent Laugh: With Dash around, Emily is keenly aware that she's not the smallest person in the house anymore. You think she'd be jealous? In reality, she's THRILLED to be the big guy. She'll start chasing him around, unleashing a DEEP, mischievous chuckle as she does. 

Most Time Spent: Trotting between family members, reading books by herself, inserting herself into anything her brothers are doing, washing the dishes with Mom, watching movies, and asking to take another bath.