As I type this out, we are at MD Anderson getting round 14 of chemo. Things have been a bit rough lately, and I wish I had more encouraging news to share with you all, but unfortunately, that isn’t the case.

As stated in my last update, Rex started the new chemo cocktail on August 11th. The one he had been on wasn’t doing the job, and his tumors had continued to grow. Not only that, but his CA-19 marker skyrocketed. When I wrote that entry, his numbers were at 162,400. The new treatment has been harder on him, but we’re not sure if it is the treatment or the tumor. He is really struggling with fatigue and an increase in pain. Food is also starting to be a problem again. Because things were getting worse, Dr. Wolff wanted to get bloodwork done again and scheduled an appointment to see him on Friday, August 20th. This is the text Rex sent to the family:

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Thank you! I feel the hugs! I have had a rough five days after this past Wednesday’s chemo treatment (the earliest I got out of bed each day was 1pm). But I woke up early. Felt good. And had a productive day today. Although, processing food has unfortunately become more of a challenge again. Therefore, I set up an appointment for Sherry and me to meet with Dr. Wolff this Friday at 10am to discuss. I will be getting lab work done ahead of time on Thursday to help better understand if I need a different type of “paint, canvas, or technique” to inspire more creative, if not voluminous, “artwork.” I will keep you updated. Thank you for your continued prayers. Sherry and I love you all!

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Update on Sunday, August 22, 2021:

Dear Family,

I wanted to provide you with an update. As you know, after concerns continued to heighten over the increase in my CA 19-9 marker number (went from 60,460 on July 9th to 162,400 on August 10th), my chemo regimen was changed for my last treatment on August 11th.

Unfortunately, while the new cocktail produced more severe and longer-lasting side effects of nausea and fatigue (which was expected, albeit to a lesser degree), it has not stopped the growth in my marker (increased further to 222,000 on August 19th). In that same lab work, it was discovered that my platelet count had dropped to 50,000 (the normal range is 140,000-440,000). As a result of both numbers (and also because of some additional pain issues), I met with Dr. Wolff on August 20th to discuss options going forward.

The plan coming out of that discussion is to continue with the current cocktail for at least one more treatment (having done only one is not enough to evaluate properly), which is scheduled tomorrow at 12:15pm. But only if my platelet count got above 75,000. Fortunately, I had blood drawn late this afternoon, and my platelet count has recovered enough to 77,000 to keep my treatment on schedule. How crazy is it that Sherry and I are in our apartment right now celebrating the fact that I can get a bunch of poison pumped into my body tomorrow?!?

But we have to keep trying stuff, fighting, and praying!!! While at the same time resting in God’s overwhelming presence and peace!!!

Thank you for your continued prayers!!! Sherry and I love you all!!!

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So as you can see, not only is his marker number now at 222,000, but his platelet levels are very low, and the last scan showed continued growth. It’s been a tough run, to say the least. Dr. Wolff wanted to give this treatment one more try today (there are too many other variables at play to change direction at this point), and if things don’t at least level off, he is looking at experimental options. He has also referred us to the pain management team, and we are waiting for them to contact us to discuss the options there.

This stretch of struggles has prompted conversations that we have been avoiding. Mainly because I have a hard time talking about anything that relates to him not being by my side. I just can’t imagine it. I literally feel like I have been cast in a horror movie, and I am aimlessly walking around in zombie mode. I don’t want fear or grief to rob me of one single second that we have together, but sometimes reality punches me in the gut. We started talking about when to start our transition back to MO and tying up any remaining loose ends. We also talked about his funeral and planning for it. I know we will all die, and I am not afraid because I know what waits for us on the other side, but preferably later than sooner. He’s too young! This isn’t how it was supposed to be. We are supposed to grow old together and sit on our front porch holding hands and rocking the day away (in a rocking chair while listening to 80’s hair bands). Please don’t misunderstand me. I know without a doubt God’s plan is perfect (and He will gloriously redeem this situation), but as a wife who loves her husband to the depths of my soul…the pain of this hurts me to my core.

Rex and I have become more focused on how we allocate our time. If he is feeling good, we want to get out and do things. To do as much, as often, as he is able. It reminds me of the Tim McGraw song, “Live Like You Were Dying.” We don’t want to waste a minute because there will likely be a time when he won’t feel up to doing much of anything. I hate that, especially for someone so full of life and curiosity of this beautiful world.

This past weekend, our friend Beth Criner, who grew up in Jackson and now lives in Dallas, invited us to the Houston Sandcastle Competition in Galveston. Her husband’s architect firm was competing and thought we might enjoy a day out. We had never met Beth in person, but she has been a mighty prayer warrior for us, and we were excited to make the trip! Rex was feeling better on Saturday, so we headed out that afternoon. Galveston is an easy hour's drive, and the weather was gorgeous! When we arrived, we found their location and artwork. It was gorgeous! We met Beth, and she greeted us with a huge embrace. She introduced us to her husband, Brandon, and their two beautiful daughters, Brooke and Rebecca. It was wonderful.
We met her friend Laura (Wilcox), who had also been in touch with me and praying for us over the last few months. We were hoping to meet Darin Maurer while there, but we arrived later in the day and missed him. Darin has also been a mighty prayer warrior and reached out to Rex early on in this journey. They all are such strong, Godly people and have been a source of strength for us. And to top it off, their team won first place in their category and also first in t-shirt design! We had a wonderful time and were so glad we went! On a side note, we learned that Rex’s parents had supported Beth when she began a Campus Crusade for Christ ministry her first year after graduating from MIZZOU. We had no idea about the connection! God is so amazing! And so are Rex’s parents. His entire family is, for that matter.

On Friday night, our friends who live in Houston, Molly and Bill Fraser, invited us to an early dinner at Roma. Rex and I have driven by this restaurant countless times and always wanted to eat there, but they didn’t open until 5PM, and that is late for us! lol. We accepted their invitation and finally got the experience. Roma did not disappoint, and neither did our dinner companions. Molly and Bill are also strong Christians who have walked this journey with us. We have talked about them before in previous updates. They have been lifelong friends of Rex’s sister, Penny, and brother-in-law, Alan, who introduced us back in January when we got to Houston. At dinner, Molly mentioned they were going to their club on Sunday to hit golf balls and invited us to join them. Not sure how he would be feeling, we gave them a maybe. On Sunday, we were up, and Rex was feeling better, so we went. We only stayed for a short while, as it was really hot and Rex needs to manage things carefully, but he was able to hit golf balls for about 15 minutes before saying he had had enough. I was so proud of him for not pushing himself, but it felt good to see him doing what he has always loved. We will definitely not be wasting the “good” days.

In closing, we ask for continued prayers for healing and complete restoration. Also, prayers for the emotional and mental side of this journey as well. We are hopeful and feel there is still a lot of “runway" left, but we realize things can change quickly. However, we have the utmost trust in Christ and the team of doctors He has placed in our lives. We are still believing in and praying vigorously for a miracle.

I know we say this in every update, but please know that we appreciate each and every one of you—your prayers, texts, calls, emails, cards, letters… all of it. Your support has made a world of difference on this journey, and we will be forever grateful! Rex wishes he could respond to each one of you personally. Please know he reads every comment and reaction on this CaringBridge site and Facebook and often rereads them on days he is struggling. You all have been a source of strength and encouragement for him! We love you all! God is good! All the time!

“The LORD bless you and keep you; the LORD make his face shine on you and be gracious to you; the LORD turn his face toward you and give you peace.”

Numbers 6:24-26 NIV