We have had some very challenging days and weeks over the last month. Thankfully, this last week July’s labs have tested well and he was able to resume his Avastin infusions. We hope to get a fifth in two weeks and the last one in four weeks. After that, we’ll have a trip to Memphis for scans, followed by a four week wash out period before we can be reassessed for a couple of clinical trials — one at Stanford and another at Baylor Medical in Houston. In the meantime, we are living a new normal and trying to fit in as much fun as we can.  Today — we are going to the OU spring football game. We’ve booked a cabin for my family’s annual lake trip at the end of May, and we have booked vacation to the beach in Alabama at the end of June. We’ll be celebrating both boys’ birthdays in May too. July’s at the zoo and Kolter’s at a Drillers baseball game. 

A couple weeks ago, we found out we would not be accepted into the clinical trial we’d hoped to get into in San Francisco. It was frustrating, confusing, and very disappointing. The team there offered their compassion, but cannot accept us into any of their trials. Why God closed this door suddenly after so many open ones, we do not know. But we trust His plan and promise. 

Despite July’s great scans at the end of March, he is having some continued loss of muscle control and weakness in his right side. He’s also in and out of being highly anxious and/or depressed. He talks about death regularly— mostly reflecting on how his Granny, Uncle Clayton, and now, Grandma Ruth are in heaven with Jesus and not one of them has any more pain, doesn’t have to take any more medicine or go to the hospital. It’s hard to hear him talk about these things, but also a comfort that he doesn’t seem to fear death, at least not as much as we maybe thought he might. And then, suddenly, his light and joy shows up. A few nights ago he was laughing in his sleep. Deep, belly laughs that shook his whole body. What a comfort to know he still has the joy we’ve always known him to have. 

Pray for us:

Thank you all again for your texts, your meals and door dash gifts, for hugs and holding our hands, for crying and praying with us. 

Many remark on the strength Kevin and I have shown. That our positivity is something not understood. That positivity is more about HOPE and less about our optimistic outlook. We have to remain hopeful. Whatever the cost. And as for strength— “The LORD is my strength and my song; he has become my salvation.”

‭‭Psalm‬ ‭118‬:‭14‬ ‭ESV‬‬

Much love.