Brace is the Man

Short Version: Fever low grade, eye is being treated, radiation #27 complete. Long Version: This morning we went to see Dr. Carroll. Brace asked me about the doctored appointment last night. I hadn't even looked at my calendar. Dr. Carroll was very sweet to us this morning. I was very worried about his eye and he said if we were isolated in the jungle he would treat his eye with antibiotic drops but that wasn't really his specialty. He thought it was a good idea to see the Ophthalmologist at 2:30pm. Then we came home and got Brace fed and downed his pain meds. Jim Hope came and took Brace to radiation #27. While he was with Jim I was able to finish exercising, shower, talk to the radiation therapist and talk to the pharmacist. Then I headed out to join them at the eye doctor. Our usual doctor was out of town this week so we met with a new doctor and he was great. He did a very thorough interview and tests. He thinks that the drops he prescribed should ...

Short Version : We think maybe his white blood cell count crashed at the end of chemo two weeks ago and that is why he has felt so awful.  Saturday was his best day yet.  He felt strong and needed very little pain meds outside of his patch and Nuerontin.  When you get good days you just assume things are going to get better and better. (Well at least I do)  He ate a few bites of different foods during the weekend and was able to drink a Dr. Pepper, Fiji water, Ginger Beer and Ginger ale.  This morning he woke up with his eye infected and it looks awful tonight and he has a low grade fever so it should be a complicated today tomorrow. I have a call into the opthamologist and we already have an appointment with the oncologist at 10am and a radiation treatment at 12:50pm. Before I Forget: Pray for Carey Penrod, our friend, that his numbers will be high tomorrow and that his family will know the best course for him. We love the entire family and they apprec...

Yesterday I was a mess, but today I am feeling hopeful....  Yesterday Brace was released from Hoag hospital in Newport Beach around 2pm.  Bryan and Chase Lake helped us carry all the stuff I had towed in there out to the car.  Remember we were there Dec 23, 24, 25 and 26th, so that is a lot of stuff for him and us.  They gave us one more shot to help build the white blood cells while we were getting packed up.  Why was he released?  His white blood cell count numbers jumped from .4 to 2.8. It is supposed to be between 4.0 and 10.5 but they thought that was high enough.   On 12/12 he was at 9.3.  None of the cultures came back with an infection.  His fever was gone as of Thursday.  In the hospital Dr. Nguyen increase his patch to deal with his pain and increased his Neurontin. He was pretty high in the hospital, but he seems like himself today and the pain is still manageable.  He still feels absolutely misera...

Numbers jumped to 2.8 yesterday and they sent us home. Brace was excited to be in his own bed.  He  wanted to run out of the hospital but luckily they made him depart in a wheelchair.  He’s still sleeping this morning.  He is so worn out.   Radiation starts today.

Post from Kjarstin:  We decided to go to the beach for Christmas! ...seriously though, this is the view from the hospital room. Here’s the highlights: 1. Video calls with Penelope with crazy filters. We talked to her a couple times today because we had to do it in between doctors/nurses visiting the room. 2. Dad was moved to a bigger room for Christmas, but still with an ocean view! 3. Dad’s white blood cell count went from 0.4 to 0.6. It’s supposed to be between 4.0-11.0. So still not good, but going up! 4. Erin has been the best nurse ever! She was our daytime nurse two times in a row. 5. We made colorful snowflakes to decorate the room. James was the best snowflake maker. 6. We enjoyed opening gifts in the hospital together. Mom discovered all the fun options included in portrait mode. 7. Dad was high from his pain meds today, so his non-sequitirs were very entertaining. 8. Free Christmas dinner in the hospital! Mom cried when the guy told us it wa...

Tuesday Doctor Plan : We are so glad we came to Hoag! At 9am, Dr. Carroll, the Oncologist, and Dr. Nguyen, the Palliative Doctor (pain doctor) came basically at the same time. I called Dr. Nguyen yesterday morning when we couldn't sleep because of pain. ER called him last night and told him Brace was here. Dr. Carroll was the doctor that said we should come to the hospital. Here's the treatment plan: Constant antibiotics in the IV Starting him on a a GCSF to build white b lood cells through his IV. Dr. Carroll is not concerned that his red blood cell count is low. He thinks that will resolve on its own He thinks when you put that much fluid in someone they pee everything out. Dr. Carroll repeated that getting through treatment is going to be gnarly until we finish radiation. Dr. Nguyen is increasing his pain patch and his Gabapentin to alleviate his pain. He says he can't really distinguish dreams from reality. As Princess Bride says, "Rest we...

Saturday night was a rough night. Brace woke up every 1.5 hours in pain so nobody slept well. :) Sunday:   It was hard to get out of bed Sunday morning so I skipped breakfast and exercising. I showered and ran to the church to make the last run through practice of Joy to the World descant.   As I said before, Brace really wanted to go to church in his red Christmas suit. (thanks for the red suit picture from Christmas Sunday 2018)  Luckily he decided to not risk the bugs because he felt so awful. Sacrament meeting was beautiful with two of my favorite speakers Anne Procuniar and Dan Schoessow and then of course, the choir sang.  The best part of church was Carey Penrod was there mask and all with Fawn and their girls. (Keep praying for Carey Penrod)  After church it was fun to chat with members.  Then I called Brace and there was no answer so I quickly drove home to get him ready for radiation treatment. ...

Many have asked today how we are doing.  He's taking a nap and feeling settled, so I thought I would give you the latest. Threw up first thing this morning before his formula.  Went to his radiation treatment today at 11:45am.  Tongue is starting to swell again.  Throat is sore.  He was able to have a 1/4 cup of soup today. :) Is currently taking his third carton of formula and nothing else has come up.  He had electrolytes twice today.  He was hot and I just took his temp. 100.8.  I texted Alice to let her know. Hopefully the Tylenol will help.  Radiation treatment will end the 2nd week of January so a little more than 2 weeks and the throat radiation targeting will stop.  :)  Will work on driving schedule as soon as radiation gives me a calendar.  Karen, the planner, doesn't like their lack of planning....  Got chemo scheduled for Irvine now starting Jan 7th.  (yes, no longer do we need to go to Newport...

So knowing there is such great progress makes our nightmare easier to deal with. Thanks to your prayers, we both were able to sleep. 10 hours for Brace. I was able to exercise which makes everyone happy. :) On my bike I rode 15.5 miles in an hour thanks to watching the VidAngel version of Jake Ryan saving the world in Venezuela. I'm a Zwifter if you know that that is. After riding, radiation called and said they were ready for us at 1:15pm today in the new cancer center. Christine and Jill Clary came this morning at 9:45am and helped me get the house ready for our family party on Monday. Oh how sweet that was..... Upon waking up he ate the new formula through his g-tube, half a carton 250 calories, before taking a shower. After the shower, he threw up stomach acid and formula. Very painful process . :( . He threw up an hour later too. We went to the treatment at 1:15 at Mission. (I think that is treatment #20 of 33 treatments) ....