Update 6/9/23: Frustration

Psalm 33:20-22 "Our soul waits for the Lord; He is our help and our shield. For our heart is glad in Him, because we trust in His holy name. Let your steadfast love, O Lord, be upon us, even as we hope in You." 

I am so thankful that God is sovereign because life would feel very overwhelming if I didn't know He had a bigger picture and plan. Yesterday, Wayne had his CT scan after his radiation treatment. We were hoping for some answers, but we are left with more frustration. The nurse practitioner (NP) messaged me and told me that there was swelling, but not enough to be cause Wayne's increased symptoms or to warrant adding Avastin. The no Avastin was an answer to prayer because Wayne didn't want to take this medicine since the results are varied. Some people experience great improvement on it, while others experience a downturn. So pretty much it is like playing Russian roulette. 

We had over an hour between appointments yesterday, so we went out for soufflés at Panera for breakfast.

The NP says that they are thinking it must be sub-clinical seizures, even though every EEG has shown no seizure activity. I am very frustrated with all of the doctors. I don't know why they wouldn't just do another MRI, since CT scans do not show much detail and leave everyone with more questions. I also don't know why they won't just be honest and admit they aren't sure what is causing the issues. It could be from the swelling, it could be from all his medicine, or it could be from progression of the tumor. They told us for six months that all his issues were from seizures, until they realized it really was tumor progression. Here is an article that explains how difficult this cancer is to treat. Pretty much it spreads over the brain like glitter, so it can impact the patient without showing up on an MRI or CAT scan. 

The highlight of yesterday's trip to the hospital was meeting up with Meghan, who was one of our Inheritance of Hope (IOH) volunteers from our retreat last year, and her husband. It was a special gift to have their company while I waited for Wayne to get out of his CT Scan. It was nice to not be alone and have someone to distract me. Joella was sad that she was unable to hang out with Meghan, since she was with her non-stop in Florida. Meghan and I discussed how crazy it is that in just the 48 hours at the retreat, we all became like family. It is hard to describe if you have not experienced it. I think that is why so many of us continue to be involved with IOH. We want other families to experience the same joy and miracle that our family experienced last year. The kids have made amazing friends who understand what they are going through, we are all part of different support groups, and I have friends who are walking along side me who have endured this terrible journey as well. Thank you once again Meghan to taking time to meet with us and for loving on our family so well. 

Meghan's 7 year old asked for a picture with Wayne where he had "peace" fingers.

Naomi and Sophia went the day with their best friend, Meghan. I love all the deep friendships my kids have with their friends here. Being in Chicago has been a gift for them the past few weeks. It has given them a way to escape all the hard around them.

My friend Susan came over to visit yesterday and brought the girls his unicorn tossing game. The kids love it.

This morning Wayne had his 12th radiation treatment. We are officially 12/15 for radiation and 16/21 for chemo. He told me that he can see the finish line! He is looking forward to two days off of treatment this weekend. He's mentally gearing himself up for his last three days of treatment. He's looking forward to going home and being off of treatment. 

Day 12

With so many unknowns, I am so glad that Wayne and I took steps to prepare for the worse leading up to his surgery. Since we knew at anytime things could turn for the worse with his health, we made sure we updated wills, made videos for the kids,  had Wayne walk the girls down the aisle, etc. I really believe that God impressed the importance of these things because He knew what was ahead. 

One of the things we did after all of Wayne's health issues earlier this year was to do our joint testimony at our Celebrate Recovery. Two days after this video, Wayne ended up having a severe seizure that left him unable to talk for about 12 hours. 

We are so thankful to Kurt for making this video for us. I thought I would take time and share our story with you so you can see how God has been so faithful to us over the years. If you would like the link to listen to our testimony, I can send it to you (at first I had it posted here and quickly rethought that idea. We are very real and open about some hard things in our lives and we didn't want just anyone accessing that). We are so far from perfect, but God continues to do a work in our lives. I think living an authentic Christian life, which includes being real about your hurts, habits, and sins, is what is missing many times in the church. We are all works in progress and I think if we are more honest with ourselves, God, and others, we would see amazing things in the church. 

I love the song "Goodness of God." because it shows that all of our life God has been faithful and that is why I can confidently state that I know that He is with us and will continue to walk along side us each step of the way, no matter how difficult it gets.

Prayer Requests:

- Please pray that Wayne's body is able to recuperate this weekend and that he regains some strength. 

- Please pray for us as we head into the last three days of treatment this next week that Wayne will be able to handle it the best he can. 

- Please pray for some of my friends who are facing the loss of their husband. Pray that they would feel God's presence and peace.

Thank you once again for all of your prayers, love, and support. We couldn't walk this road without all of you holding us up in prayer. We love and appreciate you all.