Update: 5/30/23 Treatment Progress

 James 1:12 “Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love Him.”

No human wants to endure trials, and yet it is a part of life. How we handle those trials is what distinguishes us. There are so many examples in the Bible of individuals who faced terrible circumstances and yet didn’t lose faith. I think of Joseph and his many trials (betrayed and sold by his brothers, lied about by Potipher’s wife, jailed in-justly, forgotten about in prison). He was faithful in each place and season he lived and God used him to be an instrumental piece in saving Israel from the famine. Story after story as you study the Bible, you see this. God is faithful and never leaves, even when it seems dark, lonely, and bleak. This is how Wayne and I want to be found…faithful to the end for God. We want others to see how God works through our trial and dark days for His glory!

Today was Wayne’s 5th radiation treatment and we are 7/21 days of chemo done, which means that he is 1/3 of the way done with treatment!! We met with Wayne’s radiology doctor today. Wayne will continue taking 4mg of dexamethasone for the next week during treatment to help with swelling. Next week, the doctors hope to begin to taper his steroids, as long as he doesn’t have any side effects. They do not want Wayne on the steroids for too long because they have negative side effects too. It’s a balancing act when you use steroids. Wayne was thankful for a 3 day break from radiation. It gave his brain some time to heal from the swelling. He’s still struggling with balance and right sided weakness. It’s hard to see your once strong husband struggling just to do normal activities (dressing, walking, getting into the car). But he continues to push hard and try his best.

We spend many hours in the car commuting to Chicago for treatment.

On Saturday, Wayne and I drove out to Minooka to see our friends. We had a great time with them and visited a restaurant that served huge servings. My salad was in a bowl the size I’d make my family! The one meal became 3!

On Sunday, Wayne and I sat in the balcony at church to avoid the crowds. Wayne is trying to be cautious around people and germs, since his immune system will continue to diminish the next few weeks. 

On Memorial Day, the kids walked in a local race and enjoyed a parade afterwards. Because Wayne is avoiding crowds, we skipped those festivities. My friend Angela stopped by and visited with me while Wayne took a nap.

 Later in the day, Wayne and I took a walk around Lake Katherine. We made the most of the beautiful day and made a date out of it.  

Yesterday evening, Sue and I took a long walk with Micaela and Audrey through the Dan Ryan Forest preserve. It was a great way to end a holiday remembering all those who have died for our freedom. 

Wayne continues to work hard each day on his rehab. He says he has an uphill battle since this time around has been a lot harder to rehab and he hasn’t seen much improvement. We are specifically working on his hip flexor muscles (the ones you use to get into the car since this is such a struggle).

On our daily rehab walk. I’m so thankful for this special time together each day. I never take for granted the times he can hold my hand as we walk.

Wayne enduring his budwig mixture. He is so brave. I can barely stand making it and he continues to try everything I give him that’s alternative to see if it helps him.

Meanwhile, the kids are making memories, both in Chicago and KY. The three oldest girls went with their aunt and cousin today to see the new Little Mermaid movie. Shan is picking up hours at Arby's and it looks like Abigail may be joining him there. She had a job lined up, and it fell through. So, a job is a job and she needs money for her senior year at Liberty.

Our other kids are making the most of their time in Chicago with their friends. They have spent many hours on the trampoline, reading in the hammock, playing at the park, and so much more. Today, we visited the local ice cream shop and tried their 1937 special. There were 37 golf ball size ice cream scoops. We split it between all 8 of us. It didn’t work out the best, but it was only $20 for all of us to have ice cream. We have a strategy to try next time is we try it again. 

As we enter another week of treatment, please pray for Wayne as his body is dealing with so much. The radiation wears him out and then at night he takes his chemo. So far, we have not seen too many side effects, but we know it tends to peak at the end of week two as it all builds up. Pray for stamina and his positive outlook to continue. Pray also for his thrush to heal since he is still battling that on top of everything else (another reason to get off steroids). 

Please also pray for our kids as they juggle many emotions and are processing a lot. The kids in KY are also trying to balance work and the home on top of it all. Once again, we thank each one of you for your prayers!

Update 5/25/23: Treatment Day 3

Isaiah 12:2 "God is indeed my salvation; I will trust and not be afraid."

Today was day 3 of treatment for Wayne. Every Monday-Friday, except Memorial Day, we travel downtown Chicago for Wayne's radiation. Yesterday, we decided that I would drive around after dropping Wayne off at radiation, since he is there for under 10 minutes. Unfortunately, yesterday ended up taking 45 minutes. So today, we decided to pay and park like normal. I dropped him off and entered the parking garage and found a place to park. By the time I got down to the radiation floor, Wayne was walking out of the room all done. We are going to try this routine a few times next week and see which one is the better option...driving around for 30-45 minutes in traffic or paying $13 for parking. 

We are slowly starting to see more side effects from treatment. Wayne’s brain felt fuzzy and cloudy after radiation today and his body strength fluctuates. People have been asking about Wayne’s treatments and his days look like, so I thought I’d share a glimpse of a day.

* Around 7am, Wayne gets up and has breakfast with his morning pills. He takes a mixture of anti-seizure pills, vitamins, and supplements (like Longevity which has frankincense).

* We rub frankincense on Wayne’s scalp where his tumor is located.

 * Depending on the time of radiation, he tries to take time to work on PT, since he is on a two week break from therapy. We have a call tomorrow with Shirley Ryan to decide if he's going back while we are here in Chicago or whether he will resume therapy in KY when we go home.

* For snack, I make Wayne a budwig diet smoothie (1/2 cup organic cottage cheese emulsified with 1/4 cup organic cold pressed flax seed oil-we add some fruit afterwards to help with the taste). We did this smoothie 8 years ago and I have no clue if it really does anything, but supposedly some doctor found the chemical reaction between the two ingredients is supposed to help, she we figure it doesn't hurt to try it again.

 * We head downtown for radiation after his snack. (I snapped this picture yesterday when we were stopped at a light and I noticed that Buckingham Fountain is back on). 

* Wayne eats lunch and then may lay down afterward depending on how he is feeling after radiation.

* The afternoon is low-key. Wayne may read, work on his computer, take a walk, talk with friends, etc. 

* Wayne eats dinner, watches a little tv, and takes his evening pills (the second dose of his seizure medicine and boswellia for swelling).

* Around 9pm, he takes an anti-nausea pill.

 * Around 10pm, right before bed, he takes his chemo and some RSO oil to help with his symptoms while we are here in IL. They have found that this helps patients with chemo side effects, including helping decrease swelling. We are trying anything to prevent Wayne from having to take more steroids or take other medicine like Avastin.

 * That about sums up our days. The weekends will look different because he has a break from radiation on the weekends. We will try to use that time for his to recuperate before another long week of treatment. 

Wayne continues to have some funny expressions. Last night we were talking to the kids about Tina Turner’s death. They didn’t know who she was, so we were trying to find a picture to show them. I found a picture and showed them who she was. I told the kids that she’s a singer who is known for her hair (at least that’s what I recall when I’ve seen her sing). Wayne said, “It’s not her hair, but her legs that I remember.” Micaela was perplexed and asked why. He replied, “Because they were really long and went up to…(pause)…her butt.” The whole room erupted in laughing. 

When I texted Naomi the quote, she asked who Tina Turner was too. Our friend Jason said, “According to Wayne, just have her Google legs.” Which caused us to laugh even more. When Naomi finally saw a picture of Tina she sarcastically said, “Wow, her legs do go all the way up to her butt. That’s impressive. God was really creative with her…you never see that.” 😂😂😂 These are the moments that keep us going through the hard, so bear with our silly stories. 

Wayne and I taking a walk as part of his daily PT.

While we are here in Chicago, Shan started a job at Arby's. So far he seems to be enjoying it and he’s doing a good job. He looks so grown up! Look how far he has come in six years!

He wasn't thrilled that I made Abigail take a picture of him the first day. 

Shan Chen in China on his adoption day.

This young man has always had so much joy...and he's always loved food. We got a free piece of Portillo's chocolate cake and he was so excited. He loved Spiderman his first year home.

This is my newest project for my self-care time. I have always loved Van Gogh, so I couldn't pass up this diamond art at Hobby Lobby.

The kids visited some friends at their farm yesterday. This was the only picture Sophia managed to take. 🤷🏼‍♀️

On our walk today, Wayne and I talked about my struggles and fears about his cancer and treatment. I always love how Wayne points me back to the Lord and reminds me that God not only has this, but that I can trust that He will work everything out. I don't have to try to control any of it, because none of it is in my hands. Sometimes it is scary how well Wayne knows me and understands my inner struggles. I know everything he is saying is true, but sometimes it is hard act upon that which you know. The daily battle to surrender and trust is so real. This is where the rubber hits the road, just like it did 8 years ago. 

If you are a believer reading this, you HAVE to spend time now in God's Word and studying who He is. That will be your rock and your anchor when the storms of life hit you, and the storms will come. Nothing else will anchor you like knowing the character of God, His sovereignty, and His word. It brings us such peace knowing that God is in control and that He knows the outcome of all of this. His word becomes much more real and alive when you are in dark times, especially David's Psalms. Here is a reminder for all of us: God is good, even when it doesn't feel like it, and God is in control, even when life feels chaotic. God is sovereign, even when our world feels crazy and out of control. Our job is to fix our eyes on Jesus, just as Wayne reminded me today. 

The encouragement and prayers of so many of you is what keeps us going many of these days and we are so thankful for all of you!

Update 5/23/23: Treatment Day 1

1 Peter 1:6-7 "In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ."  

And so it begins...Today was day 1 on Wayne's treatment. We had to pick up Wayne's chemo from the specialty pharmacy and then meet with his NP to receive all the instructions for treatment over the next three weeks. Wayne will be taking chemo for 21 days. He will take an anti-nausea medicine about an hour before bed. Then at bedtime, he will take his chemo pill. 

I had to wait extra time at the pharmacy, which ended up being a blessing. They had ordered six weeks of chemo, but we only needed three. I would have paid for medicine we don’t need! It was worth the time to save $200! Depending on where you are at Northwestern, you may or may not have to wear a mask, which fails to show my smile. I decided to take this picture for Abigail to show her that I’m wearing her gift to me. 

Wayne will have radiation for 15 days (treatment happens M-F). We will have to get weekly blood draws so they can check his levels from treatment. We will also meet weekly with the radiologist to discuss how Wayne is doing with treatment.

The view of the lake from the waiting room. It was a beautiful day in Chicago.

As we walked into the radiation room, I watched in amazement at Wayne's bravery. I watched the radiation team strap Wayne into his mask on the table. The mask literally holds him in place and he can't move at all. I do not think that I could endure that process! Wayne is my hero. He took everything in stride and was so courageous. We know from our experience, from last time, that everything starts to catch up during the next few days and the side effects intensify. 

I have to be honest, the last 24 hours have been very difficult. It’s feeling harder and harder to stay optimistic. Yesterday, Wayne was really struggling to communicate. He told me that he feels like the tumor is growing. He is experiencing more difficulty in talking, hearing, processing, and weakness in his right leg. He told me that tonight his brain feels off from radiation, so the effects are already showing. It is in these raw moments that my heart drops and I struggle to stay hopeful. There are many days that I just feel complete weariness. 

Below is a short video that explains the complexity of brain cancer that we are dealing with. The first four minutes are so are what explain brain cancer. The rest is him discussing a technique he has used on patients, which is not always available to everyone. 

Please keep praying for us. Pray that we don't grow weary and that we continue to just take a day at a time. All of you are standing in the gap for us!