I'm sitting here in our adjustable bed (we are spoiled) with Brace listening to Jesus is Just Alright with Me while I finally update the blog. That is a great song.... I also like The Spirit in the Sky, but Brace is not convinced it is as good as Just Alright. He accidentally hit my song and we're listening to Spirit in the Sky.
Short Version: Brace has chemo this week (3 days) and radiation ends tomorrow! Next week should be awful.
Saturday Star Wars: So Brace felt pretty stable Saturday. When Corte Haggard took him to radiation last week he got him all jazzed about Star Wars. So at around 3:30 we went to Foothill with James and Kjarstin to see Star Wars. Brace was decked out with mask and gloves. We enjoyed the movie but it wiped him out and so we headed home to try to go to bed early.
FLOOD: James and Kjarstin had been working on some Glee projects in the music lab so they headed to Glee after the movie. (Tender mercy from God that they went Saturday and didn't wait until Monday) And that is when they found the flood. Kjarstin and James handled everything on site and I was on the phone with State Farm, water damage companies and the like. Desiree Sarnowski, a dear friend and State Farm agent, gave me great weekend advice when I couldn't find my agent. The water line broke in the kitchen and there was about an inch of water in the kitchen, 2 bathrooms, office, behind the stage and under the stage. Kjarstin posted on her Facebook page and the Williams and Christensen families showed up at 9pm on Saturday to help get the water out. WOW - that is Christian service!
Sunday: We woke up to a package and card from Cosette and Brad King at our door. Oh how we miss you being in Utah. You just have to love church starting at 10:30am. Brace felt stable so he thought he would give church a try. He looked so good with his sexy black boots, black mask, and black gloves.
Monday: I spent about 3 hours doing Glee flood, insurance and charter school stuff this morning. It sounds like the landlord changed their mind and they want the insurance to go through them. I still don't quite know all the details, but we will work it out.
Jim Murri took him to radiation today. Radiation, as you might remember was bad on Friday, so I called the office, as Alice suggested, and reminded them that he needed the mask less tight on his forehead. Alice, bless her heart, had also called and talked to the therapists and Gene, the Radiation Oncology Director. When Brace went they treated him with soft gloves and radiation was just fine. Squeaky wheel gets the grease....
So while Brace is at radiation, I run to Mission Viejo to get my haircut and while I am at the salon the infusion center calls and says at 3:30pm that they have to postpone Tuesday chemo because the insurance didn't approve. There I am at the hair dresser with a dead phone (4%) trying to call the doctor, the infusion center, and Blue cross authorization, The hair dresser got me an iphone plug and let me be on the phone during the entire wash and cut. I think that because it was at the Hoag rather than UCI, Blue Cross thought it was a new round of chemo and they would take their time. By the time I got through the phone menu at Blue Cross they were closed at 4pm PST because they were Central time. I left messages with everyone under the sun (Hoag and Blue Cross) and told them there was no reason to have chemo postponed.
Tuesday: So chemo was supposed to start at 10am. Well I talked to Blue Cross at 8:15am and then at 9:00am and then finally at 9:30am I got everything escalated and approved. So we waited for an hour for Hoag to see everything on their side AND then they realized because they took us off the calendar so no chemo cocktails were ready for him. (they take 24 hours). So we were sad for an hour and then called radiation and told them we wanted to come today and not tomorrow. Thank you to Mike Silverberg and Sandy Schreiber for being willing to drive and to have me cancel last minute.
Wednesday: Corey Procuniar was willing to take Brace to chemo at 7:20am. This allowed me to wake up at 5:30am, exercise and get Brace ready for chemo and then shower after he left. Then I spent the day with Brace at chemo for 8 hours. (me about 6 hours) The nurse commented that she had never seen anyone receive that high of a dose of Cisplatin. Part of the chemo cocktail is also Etoposide, Atezolizumab and steroids. The steroids gave him a very rough night. He just wasn't sleepy and felt awful from chemo.
Thursday: With a rough night it makes it hard to get up. I got up at 6:15am and exercised and got everything ready to leave for radiation. I don't look so good but I exercised.... We met with Dr. Chou today and he said that his pain should peak in about one week after the last treatment tomorrow and then should start to improve in two weeks. We were hoping Saturday radiation pain would start to improve. Bummer. (Note to Leslie and Ben Ashby: He wore his lucky hat today and didn't get shot.)
Then we rushed home to get everything ready for chemo. Ed Mauss drove him to chemo at 11:15am but we didn't have time to feed him before he left. At chemo Brace slept most of the time and didn't drink any of his formula because he felt nauseous. Thank you to Kim Gardener for picking him up at chemo. While he was at chemo I was able to get his magic mouthwash from the compound pharmacy and get chains for the Flex and truck for going to Arrowhead tomorrow. We are hoping that tonight he can sleep....
Tomorrow: Thank you to Julie Balhorn, Ammon Harps, Claudine Barnett (the Designer) for going to Arrowhead tomorrow. It should be an exhausting day. Thank you to Dan Schoessow for taking him to radiation and thank you to Heather Goodall for taking him to chemo.
Thank you....
Short Version: Brace has chemo this week (3 days) and radiation ends tomorrow! Next week should be awful.
Saturday Star Wars: So Brace felt pretty stable Saturday. When Corte Haggard took him to radiation last week he got him all jazzed about Star Wars. So at around 3:30 we went to Foothill with James and Kjarstin to see Star Wars. Brace was decked out with mask and gloves. We enjoyed the movie but it wiped him out and so we headed home to try to go to bed early.
FLOOD: James and Kjarstin had been working on some Glee projects in the music lab so they headed to Glee after the movie. (Tender mercy from God that they went Saturday and didn't wait until Monday) And that is when they found the flood. Kjarstin and James handled everything on site and I was on the phone with State Farm, water damage companies and the like. Desiree Sarnowski, a dear friend and State Farm agent, gave me great weekend advice when I couldn't find my agent. The water line broke in the kitchen and there was about an inch of water in the kitchen, 2 bathrooms, office, behind the stage and under the stage. Kjarstin posted on her Facebook page and the Williams and Christensen families showed up at 9pm on Saturday to help get the water out. WOW - that is Christian service!
Sunday: We woke up to a package and card from Cosette and Brad King at our door. Oh how we miss you being in Utah. You just have to love church starting at 10:30am. Brace felt stable so he thought he would give church a try. He looked so good with his sexy black boots, black mask, and black gloves.
Monday: I spent about 3 hours doing Glee flood, insurance and charter school stuff this morning. It sounds like the landlord changed their mind and they want the insurance to go through them. I still don't quite know all the details, but we will work it out.
Jim Murri took him to radiation today. Radiation, as you might remember was bad on Friday, so I called the office, as Alice suggested, and reminded them that he needed the mask less tight on his forehead. Alice, bless her heart, had also called and talked to the therapists and Gene, the Radiation Oncology Director. When Brace went they treated him with soft gloves and radiation was just fine. Squeaky wheel gets the grease....
So while Brace is at radiation, I run to Mission Viejo to get my haircut and while I am at the salon the infusion center calls and says at 3:30pm that they have to postpone Tuesday chemo because the insurance didn't approve. There I am at the hair dresser with a dead phone (4%) trying to call the doctor, the infusion center, and Blue cross authorization, The hair dresser got me an iphone plug and let me be on the phone during the entire wash and cut. I think that because it was at the Hoag rather than UCI, Blue Cross thought it was a new round of chemo and they would take their time. By the time I got through the phone menu at Blue Cross they were closed at 4pm PST because they were Central time. I left messages with everyone under the sun (Hoag and Blue Cross) and told them there was no reason to have chemo postponed.
Tuesday: So chemo was supposed to start at 10am. Well I talked to Blue Cross at 8:15am and then at 9:00am and then finally at 9:30am I got everything escalated and approved. So we waited for an hour for Hoag to see everything on their side AND then they realized because they took us off the calendar so no chemo cocktails were ready for him. (they take 24 hours). So we were sad for an hour and then called radiation and told them we wanted to come today and not tomorrow. Thank you to Mike Silverberg and Sandy Schreiber for being willing to drive and to have me cancel last minute.
Wednesday: Corey Procuniar was willing to take Brace to chemo at 7:20am. This allowed me to wake up at 5:30am, exercise and get Brace ready for chemo and then shower after he left. Then I spent the day with Brace at chemo for 8 hours. (me about 6 hours) The nurse commented that she had never seen anyone receive that high of a dose of Cisplatin. Part of the chemo cocktail is also Etoposide, Atezolizumab and steroids. The steroids gave him a very rough night. He just wasn't sleepy and felt awful from chemo.
Thursday: With a rough night it makes it hard to get up. I got up at 6:15am and exercised and got everything ready to leave for radiation. I don't look so good but I exercised.... We met with Dr. Chou today and he said that his pain should peak in about one week after the last treatment tomorrow and then should start to improve in two weeks. We were hoping Saturday radiation pain would start to improve. Bummer. (Note to Leslie and Ben Ashby: He wore his lucky hat today and didn't get shot.)
Then we rushed home to get everything ready for chemo. Ed Mauss drove him to chemo at 11:15am but we didn't have time to feed him before he left. At chemo Brace slept most of the time and didn't drink any of his formula because he felt nauseous. Thank you to Kim Gardener for picking him up at chemo. While he was at chemo I was able to get his magic mouthwash from the compound pharmacy and get chains for the Flex and truck for going to Arrowhead tomorrow. We are hoping that tonight he can sleep....
Tomorrow: Thank you to Julie Balhorn, Ammon Harps, Claudine Barnett (the Designer) for going to Arrowhead tomorrow. It should be an exhausting day. Thank you to Dan Schoessow for taking him to radiation and thank you to Heather Goodall for taking him to chemo.
Thank you....
- Heather Goodall for flying up for two days to come help me. (She's a nurse practitioner) Because you are taking care of him on Friday, I can go to Arrowhead for the day and not worry about him.
- Jenny Hess for getting paper towels and salt.
- Linda Crandall for getting meds and laundry soap.
- Melissa Fulton for offering to help.
- Kjarstin, my business partner, for running Glee without me.
- James for chatting with us and wanting to hang with us.
- For your prayers
- For your texts
- Ronnetta Johnson, running the temple fireside, stake conference and FTS review without me.
- Chloe Robbins, my voice student, for texting me and telling me to have faith and be strong.
- The Chemo Made Me Do It Shirt - Heather and Rich Savage and the beautiful fasting miracle that you experienced. You guys never stop thinking of us. It really is humbling. We are praying for Kayla.
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