Update 5/9/23: Crazy Ride

James 4:13-15 “Come now, you who say, ‘Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit’ - yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, ‘If the Lord wills, we will live and do this or that.’

I feel like every time I’m updating, our plans are changing. Our lives have felt like a wild and crazy ride. Literally, I live moment to moment and day to day. I try to make plans, but I know they are loose plans and could change at any minute. 

Last time I updated, I believe we were in the process of proceeding with radiation and chemo, unless we heard from Cleveland about a different treatment. Last week, when I was in Kentucky for a few days, I got a call from Dr. Peereboom from Cleveland Clinic. We discussed Wayne’s options and it became clear that we should proceed with the trial, which targets Wayne’s unique gene mutation in his tumor. If the treatment doesn’t work, Wayne can always switch to radiation and chemo, but if we started with radiation and chemo, he would no longer qualify for this trial. Dr. Peereboom is hopeful that he will respond in a positive way to this trial. Wayne will be closely monitored with an MRI every 8 weeks, which will help us determine if we keep moving forward with the trial. We really like Dr. Peereboom since he seems to really care about his patients. Did I mention before that he has treated two people we knew? I just found out the last couple weeks that he not only treated my friend’s husband, Brian, but he also treated my friend’s mom! 

Waiting for our appointments at Cleveland Clinic this morning

So what does this trial entail? Wayne will have to come to Cleveland every 28 days to go exchange bottles of the treatment and see the doctor. Every other visit he will receive an MRI. The trial is an inhaled chemo, much like a nebulizer treatment. He will have to do the treatment 4 times a day for 15 minutes at a time. He will do this indefinitely until either it stops working or he gets tired of the routine. 

On our drive to Cleveland yesterday, Wayne wanted to stop at Blue Gate restaurant for a good Amish meal. We hadn’t been there since Joella was a baby. He had a great time and enjoyed the buffet. I think we tried 4 different desserts between the two of us. 

God is so good! Wayne always reminds me that God has everything. I’m a planner, and this whole cancer thing just throws my planning out the window. I was fretting about the start date of the trial and our trip out west to see family. Since we have to come every 28 days, I wasn’t sure how that would all work out. Well, God has worked out the kinks and everything looks like it is going to work perfect with the timing of our trip. 

This trip is important to Wayne. Some people have asked if we were still planning our trip. Although we had to modify our trip (we had to take out a week of visiting national parks in Utah), we will proceed with the trip. Wayne wants to see all his family and he loves road trips!!

Please keep praying for us as we take one day at a time. Pray that Wayne meets all the requirements for this trial so that we can proceed with it. Pray for our kids are we are hopefully navigating the last few weeks apart. And please pray for me as I continue to be the sole driver on these long drives. I calculated that I have driven over 3,500 miles in the last month or so, with no end in sight. We appreciate each one of your prayers and all of the love and support you show us!!