September — The Johnson Family

Chris’ September Work Schedule - Out of 30 Days in September Chris spent 16 Days in St. George, 5 days in Colorado Springs, 5 Days in Wyoming and 4 Days in Provo. Total work days: 10 So grateful for a whole 3 weeks together in St. George and Provo together.
Shelley’s house - See that house with all the lights on? That’s where we are lucky enough to live right now while we figure out where we will eventually buy or build. We are so grateful and love our location. PRO’s: a beautiful view from either side of the house. CON’s: the loud early-morning ducks that live on the pond! Haha

Friday, September 2nd - Mary Poppins at the Tuachan - Fun to take Megan to Mary Poppins at the Theater. It was an uncomfortably hot September night and I think it came down to 97 degrees as we were walking back to the car at 11:15pm, but the show was fun… especially the tap dancing scene with Mary, Burt and all of the characters. Simply amazing!

Saturday, September 3rd - BYU/USF Football Game at the Christoffersons - So fun to live close enough that we can get up, make some homemade salsa, pack the van and drive straight to the Christoffersons home in Highland for a BYU watch party. The game ended up being lightning delayed over and over again but it was fun to hang out, visit, eat and finally watch such a good game. Go Cougs! At 8:00 we headed down to Provo to watch the BYU women’s soccer game with Megan, Jon and Jane and then ran into Carter and Hanna as well. Fun to have a Cougar Friend day. We ended up staying the night with my Mom and Dad in Provo. On Sunday morning, Dad was so anxious for Chris to read his MRI that we ended up waking Chris up to come and look at it. Then he spent quite a bit of time researching.
Update on my Dad after being together - “For those of you not with us this weekend I wanted to send out an update. Dad’s not doing well. Chris will have to help me out with the terminology but after looking at the MRI there is definitely a growth at the base of Dad’s brain - the size of two dimes - and after doing some research it’s likely from his prostate cancer and is pretty rare. This is what’s causing the excruciating pain in his face, jaw, teeth and tongue. Neuroradiologists have read it and made an official report which we assume will get to the doctor hopefully soon. Dads not in any condition to have a procedure to figure out what it is for sure, but we anticipate them wanting to treat it with radiation. Waiting to hear from the doctor tomorrow hopefully. Meanwhile keeping him fully medicated and out of pain has been a real challenge. Brian said this morning was the worst he’s seen him and it was quite alarming. Brian gave him a great blessing last night. Dad was barely out of his room because of pain. He and mom both need our prayers.”
Several days later my dad texted “This evening the neurosurgeon called us back and said that there were a group of seven doctors that met together to discuss my case and they determined that the best course of action was to go into the tumor and reduce it in size. They would be going through the left side of my head just below the skull. Not through the nose as one doctor suggested. The doctor is trying to move things along and it looks like the surgery will be scheduled for sometime next week.” My parents both felt great support from the doctors which made them feel guided and directed. My mom said, “I know we still need to trust and have faith that things will go according to God’s will.”

Brian here for the Week - Brian drove home with us and stayed from September 5th - 9th. We went to Tifany’s Creperie for Brunch, the play CLUE in Cedar City (which was hysterical), watched two of Megan’s Dixie Soccer Games, cheered from the side as Luke ran in a nearby cross country meet, shopped with Matt and Luke at Ancestor Square and the cute little St. George bookstore, played MULTIPLE games of Wingspan, watched a few movies, had great talks and toured the St. George Tabernacle — coincidentally figuring out that our tour guide is my Dad’s cousin. Grateful for that little blessing. It was GREAT to have Brian hang out with us for the week. Love him.
September 10th - Another Dad Update - Text to the family… “Chris and I got here to Provo last night about 8 p to hear that yesterday was dad’s worst day ever. Suffering with blocked bowels. He’s in so much pain. Late at night he started to have a fever and was clammy. His urine is dark and Chris worries he has a urinary track infection. We almost took him to the ER last night - inf ace we started to get him up and dressed but he’s so weak. He’s constantly saying, ‘Mary, I can’t do it. Mary, where are you? It hurts so much.’ It’s heartbreaking. Mom was pretty emotional, shaky and weak herself. After a series of events we ended up deciding to lay him back down and get some rest. Chris sent Mom to get some rest downstairs with me and he slept (or didn’t sleep) on a mattress on the floor beside him, helping him throughout the night. It was really good that mom got five hours of sleep. Things don’t look any better this morning. We are getting him ready to go to the ER soon. Getting him there is going to be a challenge.”
- Carly - “Oh Lisa this is so heartbreaking. I’m so happy that you guys are there to help. We had no idea how bad it was. Do you need Mike?”
- Scott - “Thanks for being there for him! Please keep up posted on how we can help today.”
- Amy - “Oh, this is so heartbreaking. I’m so grateful for all you guys that are able to be there with Mom and Dad.”
- Chris J - “Here is the latest update. His lab tests have come back mostly normal so far. His white blood cell count and lactate are normal so no sign of sepsis or serious infection. His liver tests are slightly elevated which could be from a lot of things. Next step is to get a urine sample, which he hasn’t been able to give so far. But he is getting fluids through his IV so that will hopefully be possible soon. Also a CT of his chest and abdomen and pelvis to look for signs of infection and rule out bowel obstruction and look for any new metastases. Will probably take an hour or two before those results will be available.”
Meanwhile Mike arrived and then Dan, Amy and Scott all called me to get more details and I talked to them back-to-back out in the hospital hallway. Dan was trying to decide if he should get in a car and come straight out. Hard to tell him what to do. It wasn’t long after that he decided to come. The whole family packed in 45 minutes and then started the drive from Reno.
- Mike - “Results are in. No sign of pneumonia, but unfortunately he has proctitis. Infected and inflammation of the rectum. He will not be able to treat manually. No enemas or manual disimpaction. He will need to take lots of laxatives. They have decided to treat it here at the hospital. The doctor things it could be a 2-3 day stay, but he feels like that is the best chance to get better for the surgery scheduled for Tuesday.”
They moved him upstairs. At 5:00pm I texted everyone… “He’s not doing great right now. His blood pressure is 97/54 so that’s pretty low and he feels awful. He says he keeps ‘going in and out of consciousness’ and then stops breathing and then gasps and wakes himself up. Poor guy.”
Dan and Sarah went straight to the hospital. Scott was there too. At 7:00 Dan reported that he was sleepy and having a hard time waking up and Scott said he wasn’t feeling well, in and out of sleep and groaning because of the pain.
BYU Games - Chris and I and the kids headed to the BYU Women’s Soccer Game and met up with the Jacksons and then Carter and Hanna Chugg. Then we rushed over to the BYU Football game while my Mom watched from the hotel room. What a game. We could have had the win several times but missed the field goal over and over. It was such a suspenseful game but we pulled a win and ended up storming the field, which was pretty epic. We hung out for a long time and then went to wait to see Chase as he was leaving the field. He was excited to see the girls. What a fun night!

Mom slept at the hospital and my family and Dan’s family slept at Mom’s house. Chris, Dan and I headed to the hospital first thing in the morning and ended up staying there to watch my mom’s Sacrament meeting with her, took turns reading in a book about the temple and had great conversations while my Dad was in and out of sleep and in so much pain. His pain was at a level 7. He really wasn’t doing well and needed more pain meds but it was a really wonderful morning together — one I’ll remember always. An elderly missionary couple came in to give us the sacrament which was wonderful.

Brian got to the hospital as we headed home to get something to eat. Sarah had taken the kids to church and then started making some pasta for the group. Carly came over with salad and we put together a great meal. Mom came home to get something to eat and to shower and grab some new clothes and then she headed back to the hospital to be with Dad and Brian.

At Mom’s house, we cleaned up dinner and divided up the house so that it was cleaned, vaccumed and straightened up. I grabbed white paper and cut it up so that everyone could write an uplifting note and leave it somewhere in the house for Mom to find later. It was fun to work together.

Dan and family left and stopped by the hospital to visit with Dad. We didn’t think we would overlap them but they were still there when we headed to say goodbye before heading back to St. George. It was so good to be together and see him when he was awake and with pain more managed.

It was so special to there with everyone for these crazy hard 48 hours - and talk to Amy on the phone a couple of times too. Feeling very unified and so grateful for my parents and siblings and families.

Elisha - “Especially thanks to Chris for doing so much this weekend! Fun to see everyone here!”

The next day Mom reported that Dad was still asking for more pain meds. So frustrating that it’s not being managed well. Dad wants to wait and get better before the possible brain surgery. They did a CT scan of the abdomen and did a blood transfusion as well.

Brian texted this picture and said… “They found your hidden notes! They’re reading them now. Mom texted “What a fun surprise as I went home to get a few things and saw these notes all around the house. You guys are awesome! Thank you! I cried as I read them!” Then Mike added, “We cried as we wrote them!”

Chris J added that the CT report says the findings associated with his proctitis have worsened a little bit over the past two days. It doesn’t mean the treatment isn’t working, just that the wall thickening and inflammation have not started to reverse and improve yet.

The doctors don’t understand why the inflammation around the prostate and bowel area. They are thinking it is because of the radiation treatment in the past which would have been the radioactive seeds that were put in the prostate 6 years ago. There won’t be any surgery yet. There was some discussion about when he would be able to leave the hospital and that was very concerning to Dad as he doesn’t feel like he can handle things at home yet. There was discussion about maybe going to a skilled nursing facility as an interim before getting home. Mom wonders if our home health and palliative care will be good enough. Hard decisions to make.

Dan and Sarah sent flowers and they loved them. Chris Silva texted… “We sure do love you two and I don’t think either of you have left our thoughts for one minute these past few weeks!”

The new plan… Doctors have been consulting more and more on Dad’s case and we just had Dr. Sorenson in from the hyperbaric chamber explain how that could help heal the damaged tissue. There would need to be 40 sessions to get the full benefit. 2 hours long every Monday-Friday. It’s a big time commitment but they seem to feel like 75% chance it would help with the symptoms. Dad is willing to give it a try. Dad’s extreme pain in his face is more manageable right now. Surgery for the brain up in the air at the moment.

Carly texted… Whitney gave a cute prayer…” Jesus, please help me know how I can help Grandma to be happy and not cry.” That made me cry. She loves you both so much! After the prayer Mara told Whitney, “That was a nice prayer, Whitney!”

Brian stayed the night at the hospital with Dad last night (Thursday, September 15th) so Mom could have a good night’s rest. Thanks Brian!

Walk through Downtown St. George - The days are hot so I like to get outside first thing in the morning. Sometimes, on the days I drop the boys off for school, I head up to Pioneer Park, or walk around Dixie High and to the Temple grounds, or walk around my neighborhood… But today I took my camera and walked up and down East Tabernacle Street and the surrounding area. Love exploring this new place.

Shelley here for a Week - Grandma drove to St. George on the 12th. As soon as she got here we headed to Tuachan for the production of Wonderland and liked it a lot! It was a lot of fun and we had great seats. We spent the week looking at a few neighborhoods and homes, going out for lunch, cheering for Megan playing soccer, watching shows and shopping for new blinds and lighting fixtures which she has wanted to get replaced for awhile. She says we always keep her pretty busy.
100 Days Before Christmas - Fun to celebrate our annual 100 Days before Christmas party. We ate Christmas breakfast and grape juice, wrote a list of Christmas ideas and gifts, watched a Christmas movie and worked on a puzzle. I think Ryan and Cassie put on a 100 Days party too! Love it.

Saturday, September 17th - Homecoming for Megan - Megan enjoyed a fun date night with Max and a big group of Juniors. She loved it and the whole group loved getting to know her and mourned the fact that she’s a Senior. Megan’s feeling sad about that too! Cute pictures on a separate post.
Sunday, September 18th - A tour at the Hamlin Home - One Sunday afternoon we visited the Hamlin Home and got a wonderful tour and lesson of the history of Santa Clara and the Hamlin family. It was really fun.

Monday, September 19th - Chris and I hosted the Dixie Soccer Team Dinner at Tonaquint Park. Taco piles for the whole team.
Sports - Lots of High School soccer practice and games for Megan, cross country practice and meets for Luke, and the start of some basketball practice for Matt. Chris spend quite a bit of time enjoying the golf courses in St. George getting ready for his Guys Golf Trip coming up in October.
Saturday, September 24th - Swiss Days - So much fun celebrating Swiss Days in Santa Clara. Extra meaningful as we read up on Samuel Wittwer and other members of our family who founded Santa Clara. More pics in a separate post.

September 24th - Update on Dad from Mom… “Scott slept in our room last night with Dad to help take care of him. It was very helpful. Now back to a situation where it’s hard to know what to do for him next. He is so weak and in pain all over his body. We’ve upped his oxycodone like the nurse told us to do. Hoping it would help. He’s also nauseous so he’s afraid to eat anything. We are waiting for the home nurse to come and visit Dad. He’s so so sick. he has a fever now of a 100 which I know isn’t very high but it’s something. He’s actually hoping the nurse will tell him to go to the hospital so he can get some help.” So heartbreaking. Within an hour the nurse suggested they head in to the hospital to get an IV, so back they went. Mike helped Mom get him over there. Mike then texted… “Okay, they just drew blood for blood work. After those results come back they’re planning on doing a CT scan of his chest. They are concerned about a blood clot because of the swelling in his legs and face. He was getting relief from the pain but now his nerve pain is really starting up. He needs his gabapentin but probably won’t be able to get it until after the rest results come back.” Scott: “Thanks for being there with him Mike …and with mom!” Everyone has been so wonderful as they text and show their love for Mom and Dad and their appreciation to everyone else who is helping. I’m so grateful for Scott, Mike and Brian who have been there for them in so many ways.
At 9:00pm they finally moved him from the ER to a room upstairs. Mom said, “He’s much more relaxed now. He just ate a pudding with his medication. The only food he’s had all day. I’m watching the BYU game and Dad just fell asleep.”

At the end of September Dan and James made a quick weekend visit to see Mom and Dad. A week later in early October Amy flew out for a week. So grateful everyone is getting time with them.