It is a banner day. I am writing a CaringBridge update!! Sorry this is so belated. As much as I ragged on Houston in my last post, the trip to MD Anderson was pretty great. The doctor that met with Jon spent over an hour answering questions and explaining things to us. We joke that MDA is the Disneyworld of cancer. Everyone is so nice and everything is so organized. Even our shuttle driver was encouraging and sweet.
We learned that Jon's DNA sequencing failed, and we won't be able to do it in the near future. In order to diagnose him, the pathologists de-calcify the bone and run a bunch of stains over it. Cells that have certain mutations absorb the stain. Decalcification damages the DNA, and they had to use all of the tissue that they got in both biopsies because they had to run so many stains. So, there's no more un-calcified bone left for sequencing. We asked if we could do another biopsy, and his doctor said that he thinks Jon's tumors have shrunk so much already that they wouldn't be able to get any tissue to sequence if they tried to biopsy. So that's a positive! We really only need the sequencing if first line of defense (chemo) fails in the future. At that point there would be tumor tissue to biopsy, and then they'd do targeted DNA therapy. We are hoping we don't even have to walk that road though!
The pathologists at MDA looked over Jon's slides and said that the diagnosis we've been given is the diagnosis they'd give too. So, without further ado, Jon's official official diagnosis is small round blue cell sarcoma in the Ewing-like family with a presumed BCOR-CCNB3 rearrangement. Not a mouthful at all. We are so pumped to have the folks at MDA on our team. Jon will continue to do chemo here in Dallas, but will travel to Houston every six weeks to have his scans and check in with the MDA docs.
While we were in Houston, we got to visit my brother-in-law's dad's restaurant. My BIL is a really, really good cook so I knew it would be good, but y'all. It was AMAZING. Best steak I've had in my life!! They called it the cowboy steak. I'm salivating thinking about it. Flatbread, empanadas, fried plantains... it was all so good. Y'all know how much I love to hate on Houston, and I can't wait to go back just to eat there again. If you're in Houston and want some really excellent food, visit Sal y Pimienta. Incredible.
The trip was quicker than we thought, but we managed to have fun while we weren't visiting with doctors. We got to go to Rice Village (so cute!) and see Jon's college roommate and his wife. We also almost got stranded at The Gyro Pit because I kept pronouncing it "euro" and the lady that dispatched the shuttle didn't realize I was saying "gyro." She said "ma'am, you're at the guy-ro pit, not the euro pit." That was real funny. The next trip to Houston is set for mid-July. Jon will have another PET scan then that they can compare with his most recent one to see how his tumors are responding to chemo. I hope to go so I can eat more steak. Gotta put a line item in our budget for cowboy steak, lol.
Overall, Jon is doing really well! We are very thankful. The last two weeks have been some of the most normal weeks we've had since the beginning of this whole process. It has been a much-needed and very welcome change of pace. We've gotten to see friends, go on dates, and have a lot of fun. We have savored every little normal thing and it's been awesome. We're learning how to live more in the present and worry less about the future. That mindset has brought a lot of peace and joy.
If you're a blog boy, you know that Jon is back on some pods and writing some articles. I'm back at work too. It has been so much fun!! We both have awesome jobs. Shout out to our amazing employers, The Ringer and Denison Ministries. They have been incredibly generous, flexible, and kind. We work for and with some of the very best people. We are so grateful.
As we've walked through all of this, we've realized that there are days when one of wants to talk about something that the other just can't handle. Some days feel so normal that we don't want to talk about cancer at all. And other days we just don't know exactly what to talk about. We're both in counseling, which has been good. We love a good therapy sesh. We've also been going through a workbook called A Parent's Guide to Sorrow and Suffering. It's branded for parents and written for two people to go through together, but is such a great resource and applies to more than just parents or couples. Each day there is a little mini-devo, a few discussion questions, and a guided prayer. Some days we'll do the discussion questions together, and others we just journal out our thoughts. Today was the last day and I liked it so much that I might go through it again. It's been incredibly helpful to aid us in processing our grief together. We would highly recommend if you're going through tough stuff and need a good resource to help you process.
Jon starts his next round of chemo Monday. He'll get a new drug and they told us that he could hallucinate in the days following treatment, but not in a fun way. So, we're hoping for that to not be one of his side effects. His new drug can be harmful to the bladder, so he has to carry around a pump that will constantly infuse him with bladder protecting meds for a week. The pro of this situation is that the pump looks like a purse, and I cannot wait to tease him mercilessly about his murse/satchel. "It's Italian!" So stylish. Another pro is that he'll now have a place to store his AirPods and he won't lose them as often.
- As always, Jon's mantra: I will beat this, I will live to raise Jackson, Matthew 6.
- That Jon will be in the 6%! That he'll beat cancer, not come out of remission, and live a long and healthy life.
- That Jon will tolerate his new drug and next round of chemo well.
- That Jackson doesn't try to play with Jon's new cool murse. But for real - that somehow we can hide the tubing and that Jackson thinks it's super lame so Jon can still hold him and play with him.
- That Jon continues to feel good and that the continued rounds of chemo don't wear him out.
Thank you for praying, reaching out, sending food + venmos, and loving us. We love you guys so much!!