I just spent an hour and a half with Bryce—just us, talking and smiling until he drifted off to sleep a few minutes ago (or 2 1/2 hours ago, based on when I finished this post). He finished dictating his golf post, which we have spent about two minutes writing each night since the tournament (his post follows this one--make sure you see it!). I cherish these moments with Bryce, as they have become few and far between. People have asked me what a typical day is like for us, as I have shifted from wife and best friend to caregiver, which apparently is typical for situations like ours. I get up in the morning to Dani’s babbling, then stick her in bed with Bryce while I prepare her bottle, Bryce’s mango juice, Airborne and daily medications. I feed her and play with her while Bryce gathers enough strength to take his meds and make the exhausting 8-foot trek to the loo. His Jamba Juice usually arrives at this point (thanks, Rog!!), followed by Dani’s morning nap (which is getting shorter by the day—not cool!!). This is when I shower, change and throw my hair back (friends and family will shrink in horror when they hear that I have actually done my hair and makeup about FIVE times since July 18!! Yep, me—Miss High Maintenance. The MAC counter must be having withdrawals from me!! I’m so nasty. My sisters must he appalled.). Dani wakes up after 45 minutes and wants to eat. This is when we receive our daily visit from Bishop B., which we LOVE. (Thanks for all the Dani duty you have pulled, by the way—you must be an awesome grandpa!) Nurses, friends, family, etc. follow closely behind, followed by Dani’s nap, when I try to get a few things done. Bryce sleeps when there’s a lull in the action. I answer work calls randomly throughout the day. More family, friends and well-wishers arrive sporadically. (Don’t get me wrong—we love our visitors! I’m just illustrating an average day.) Dinner comes, which Bryce usually eats in bed while I take care of Dani. Occasionally I have a chance to run a few errands while somebody stays with my little family. (Aak!! I forgot to buy ant traps!) Dani goes to bed, we visit with loved ones, Bryce falls asleep, I join him at midnight, I stay up half the night with my thoughts. Of course, my thoughts always lead to action, which involves getting up and researching. This is also when I pillage the snack bin. Mmmmm .the snack bin . my chocolate, sugar-coated, nocturnal fourth meal. Or first meal. Whatever. There you have it—a day in the life of the Brown family. Chocolate Brown
Bryce is doing well, despite everything. We had a scare this weekend when he developed some pretty intense chest pain, but it is most likely referred pain from the cancerous vertebrae and ribs. He and I were scared, but once Dad explained his theory (which has been seconded by Dr. Isotope), we calmed down and Bryce took some ibuprofen to lessen the referred pain. It worked. His nausea and energy level have stayed fairly constant for several weeks, which we choose to believe is a good sign! It has been almost two weeks since his last blood transfusion, and he isn’t white as a sheet—he’s very pale, but he’s not quite to the linens stage. The hospice nurse will draw blood tomorrow (hopefully) to check his red count, among other things. Now that there’s a ton more blood available, thanks to many of you, any future transfusions won’t even dent the supply. Bryce went without his oxygen for about 10 minutes today before he realized it wasn’t blowing (I know—I don’t get it either ;). While that would have been a tragic situation a month ago, he maintained adequate saturation levels without his O2. Woohoo! Knock on wood knock on wood knock on wood ..
The past weekend was AWESOME. My Uncle Robbie and Aunt Kathleen flew to the SLC just to visit us. I haven’t had many opportunities to get to know them, as life and distance have gotten in the way. I know, that’s a pretty weak excuse. This disease has kicked a lot of us into action and opened our eyes to what really matters in life—our loved ones--and it’s better now than never! We had more than 30 years on which to catch up, which was FUN! Bryce and Rob “clicked”, and Bryce keeps talking about their great conversations. They helped with Dani, with housework, and with our morale. Bryce’s family took Dani overnight, which gave us a lot of time to kick back and talk. Kathleen bought Dani the cutest little outfits (12 months!!!)—thank you SO much! Dani adores Uncle Rob, and she just stared at him and smiled. They brought us a gift from Mel Mel and Unkie Jimmy—a salt shaker with a bold label, “FOR KILLING CANCER”. Awesome. Thanks! It was great on my fries today (my nutritional deficit is getting pretty scary). We met their cute friend Scotty, who proved the “small world” theory again and again. Robbie and Kathleen, we love you a TON! We can’t wait to hang out again!! Stay strong! We also had a couple of special little visitors a few times over the weekend—Matt’s (Blogmaster) little boys, who are cute, smart, and big fans of Bryce! They loved my collection of crocodiles, which endeared them to me instantly. And vice versa. I got them amped on chocolate each time—sorry, Stacey! We love that family!!
We had an interesting experience Sunday night. We received a phone call from a complete stranger (a sweet, compassionate, smart man!) who had seen the news story about Bryce. He was moved by the story, and felt inspired to drive two hours to find us and share with us his nutritional supplement, in which he truly believes. We were skeptical yet intrigued. He gave us a month’s supply and told us to pray about whether Bryce should take it. Of course, I stayed up researching the ingredients. It seems safe, and given the randomness of the situation, we may be remiss if we shun this man’s spiritual promptings. I’ll keep everybody posted.
Lastly, and I boldly bold this for good reason, I posted about the photographer who came to our home last week and took photos of our family. Our friends, the Steadmans, sent her to us out of the goodness of their hearts. Thanks, Toph and Julie!! Jessi, the photographer, sent us the web address to our photo shoot. She has graciously allowed all of our readers access to our photo shoot, which everybody should check out! Her pictures are BEAUTIFUL! She is compiling an album for us, free of charge. Not only is this a selfless act of kindness, but she donated her time, equipment, and money for a couple of strangers. What a remarkable woman!! I will put out the call to everybody—when you want exceptionally beautiful photographs taken (or hideous photos--I'm sure she'll humor you!), please use Jessi! We would love to repay her somehow, and generating business is one small way we can do this. You won’t be disappointed!! Go to www.jessistringham.com/brown to view all the pictures. If you want to see the condensed version, go to www.jessistringham.com/familiesareforever. Let me know what you think!! We were moved to tears, and I know many of you will be.