SHORT VERSION: It has been an eventful week and we finally feel like he is progressing. Here's the one sentence summary: Immunotherapy this week, gained a 2-4 pounds, progress in eating (one meal a day by mouth), and his hair is starting to grow.
and the long version...
On Friday, the last day of the show Anytime Garage Doors from Las Vegas responded to Brace's text from Thursday. (Joey, Michael and Michael) They were going skiing the last day of the IDA show and realized they would miss Brace so they texted him to see if they could meet him in the hotel lobby. After meeting with Anytime we went over to the show for the morning and then around 1pm headed for the airport to head back home.
Saturday and Sunday he basically slept all day and night, but he seemed pretty stable. The garage door show last week was a lot for him. I went to church on Sunday and Gabi Stemrich came and joined me and that was fun. When I got home Dylan Harps and Kai Williams came to bring Brace the sacrament. Such great young men.
On Monday he started at physical therapy. If you remember, he didn't like that the therapist insisted on talking the whole time. I left a message with them asking her to talk less. I really need Brace to be willing to go to PT so he can get his muscles back. This week I went back to work to running Glee Music Academy and teaching my students. Brace tried to work, but he was pretty tired.
Tuesday he woke up at 8am and threw up three times in 2 hours. He hasn't thrown up for almost seven days..... Eeeek! I was so planning on isolating immunotherapy to decide if the therapy was making him throw up. That doesn't work very well when you throw up before the treatment. Then Immunotherapy was at 11am and Dr. Nguyen (Palliative Doctor) at 1:30pm in the same Irvine Hoag Infusion Center.
If you remember, I moved our meeting up a week so we didn't have to wait another week to figure out how to make a plan to get off the patches. As you know, we tried twice to do this and both of those attempts were a disaster and involved Brace crashing, throwing up and feeling awful for days and even a week. It took a while to convince Dr. Nguyen that we believed Brace had no pain and was anxious to get off the patches. We told him of our fear of being nauseous and we felt like the patches were blocking that pain. The doctor was adamant that the patches were not for nauseous so we said OK give us something for that. He took us off Zyprexa and Compazine. He kept us on Zofran and Reglan. At 2:30pm Brace decided to take off one of the two 12 microgram patches. We are hoping beyond hoping that the next day would not be a day of throwing up.
I think when he does immunotherapy it knocks him out for about 48 hours. He can function but he is tired. Hopefully when we get rid of the patches he can recover from the immunotherapy exhaustion faster. :)
Wednesday he saw two clients in San Diego. Garage Door Unlimited surprised him with beautiful flowers, balloons and a card sign by their team saying Welcome Back! They were the same owners that gave him the fart machine in the thick of his treatment. No throwing up all day.
Thursday: I got a call from a navigational nurse on the Hoag side. If you remember the amazing Alice on the Mission Cancer, she is like her. She called in the middle of my work but I told her to email me. Later that day I asked her if the next four immunotherapy treatments were approved. She emailed me two hours later with an affirmative answer. I am so excited to have her. The MyChart app is sometimes a little delayed in talking to the doctor. Then she asked if she could do anything else and I asked her to get the next 4 treatments scheduled. We will see how that goes. She asked.... :)
Friday: He had his weekly sales call with the Marantec team. He did quite a bit of work as did I. At night my sister, Diane Perkins, and her husband Scott joined us along with Kjarstin and James for a night at the Newport Beach temple. This was Brace's first visit to the temple since his diagnosis. It was a lovely night and we ended it with dinner together at Flower Child in Newport. Brace was able to eat his steak and a little bit of brussel sprouts, but the potatoes were a little too rich for him.
Saturday: The heater died at the house so it was 63 degrees in the house. We luckily have a fireplace upstairs and downstairs. We rarely use them but they came in handy today and last night. They should have the part to fix the heater on Monday. James and Kjarstin offered to get food for us while they were at Costco. James filled up his cart and Kjarstin filled hers and then they brought it back to Brace while I was getting my hair cut. :). Before going to bed we watched the amazing show "Picard". We felt so good about the decrease in his patch but he is going to try to go without putting on his new patch tomorrow. We will need your prayers on Sunday night through Monday night.
Just got word from the Hoag navigational nurse that she got all the appointments for me. WOW!
Many of you have been asking on the timing for the final scans.
April 1st: PECT scan
April 2nd: Brain MRI
We should know results mid week of Spring Break.
Thank you's
Erik Larsen for coming to visit
Bob for helping with the trash
Kjarstin and James for a Costco Run
Jana and Larry Lennon for movies and the idea for a food saver.
Thank you for the funny card from Nancy Boyce
Thank you Ben, Leslie, Curtis, Ethan, Sara, and Blake for the beautiful card.
Thank you for the scarf from Michelle Stevens
and the long version...
On Friday, the last day of the show Anytime Garage Doors from Las Vegas responded to Brace's text from Thursday. (Joey, Michael and Michael) They were going skiing the last day of the IDA show and realized they would miss Brace so they texted him to see if they could meet him in the hotel lobby. After meeting with Anytime we went over to the show for the morning and then around 1pm headed for the airport to head back home.
Saturday and Sunday he basically slept all day and night, but he seemed pretty stable. The garage door show last week was a lot for him. I went to church on Sunday and Gabi Stemrich came and joined me and that was fun. When I got home Dylan Harps and Kai Williams came to bring Brace the sacrament. Such great young men.
On Monday he started at physical therapy. If you remember, he didn't like that the therapist insisted on talking the whole time. I left a message with them asking her to talk less. I really need Brace to be willing to go to PT so he can get his muscles back. This week I went back to work to running Glee Music Academy and teaching my students. Brace tried to work, but he was pretty tired.
Tuesday he woke up at 8am and threw up three times in 2 hours. He hasn't thrown up for almost seven days..... Eeeek! I was so planning on isolating immunotherapy to decide if the therapy was making him throw up. That doesn't work very well when you throw up before the treatment. Then Immunotherapy was at 11am and Dr. Nguyen (Palliative Doctor) at 1:30pm in the same Irvine Hoag Infusion Center.
If you remember, I moved our meeting up a week so we didn't have to wait another week to figure out how to make a plan to get off the patches. As you know, we tried twice to do this and both of those attempts were a disaster and involved Brace crashing, throwing up and feeling awful for days and even a week. It took a while to convince Dr. Nguyen that we believed Brace had no pain and was anxious to get off the patches. We told him of our fear of being nauseous and we felt like the patches were blocking that pain. The doctor was adamant that the patches were not for nauseous so we said OK give us something for that. He took us off Zyprexa and Compazine. He kept us on Zofran and Reglan. At 2:30pm Brace decided to take off one of the two 12 microgram patches. We are hoping beyond hoping that the next day would not be a day of throwing up.
I think when he does immunotherapy it knocks him out for about 48 hours. He can function but he is tired. Hopefully when we get rid of the patches he can recover from the immunotherapy exhaustion faster. :)
Wednesday he saw two clients in San Diego. Garage Door Unlimited surprised him with beautiful flowers, balloons and a card sign by their team saying Welcome Back! They were the same owners that gave him the fart machine in the thick of his treatment. No throwing up all day.
Thursday: I got a call from a navigational nurse on the Hoag side. If you remember the amazing Alice on the Mission Cancer, she is like her. She called in the middle of my work but I told her to email me. Later that day I asked her if the next four immunotherapy treatments were approved. She emailed me two hours later with an affirmative answer. I am so excited to have her. The MyChart app is sometimes a little delayed in talking to the doctor. Then she asked if she could do anything else and I asked her to get the next 4 treatments scheduled. We will see how that goes. She asked.... :)
Friday: He had his weekly sales call with the Marantec team. He did quite a bit of work as did I. At night my sister, Diane Perkins, and her husband Scott joined us along with Kjarstin and James for a night at the Newport Beach temple. This was Brace's first visit to the temple since his diagnosis. It was a lovely night and we ended it with dinner together at Flower Child in Newport. Brace was able to eat his steak and a little bit of brussel sprouts, but the potatoes were a little too rich for him.
Saturday: The heater died at the house so it was 63 degrees in the house. We luckily have a fireplace upstairs and downstairs. We rarely use them but they came in handy today and last night. They should have the part to fix the heater on Monday. James and Kjarstin offered to get food for us while they were at Costco. James filled up his cart and Kjarstin filled hers and then they brought it back to Brace while I was getting my hair cut. :). Before going to bed we watched the amazing show "Picard". We felt so good about the decrease in his patch but he is going to try to go without putting on his new patch tomorrow. We will need your prayers on Sunday night through Monday night.
Just got word from the Hoag navigational nurse that she got all the appointments for me. WOW!
Many of you have been asking on the timing for the final scans.
April 1st: PECT scan
April 2nd: Brain MRI
We should know results mid week of Spring Break.
Thank you's
Erik Larsen for coming to visit
Bob for helping with the trash
Kjarstin and James for a Costco Run
Jana and Larry Lennon for movies and the idea for a food saver.
Thank you for the funny card from Nancy Boyce
Thank you Ben, Leslie, Curtis, Ethan, Sara, and Blake for the beautiful card.
Thank you for the scarf from Michelle Stevens
Comments
Post a Comment