MD Anderson, DNA sequencing, and back to work!
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!!
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- Alex SudanPraying for you guys this morning! Thank you for the update.6/25/21
- Lu PresleyThank you for taking the time to write updates. I’m sure some days are daunting but knowing you have so many praying for you will carry you through days like that. Deepest heartfelt prayers for y’all during this difficult journey that is in your lap, but I believe for a good reason. Jesus picked y’all because He believes y’all will point back to Him and give Him the glory in everything. And you are. Well done good and faithful servant! Love and prayers from Danny and Lu Presley (friends of your parents from PCBC young married SS class of Cam Zachary (former Bob Langford SS class our first yr 1984))6/14/21
- Luke DeMarteWindhorst reporting that Lebron's jersey number change to 6(%) is his nod to Tjarks beating cancer. Continuing to root for you guys!6/11/21
- Laura ThorntonContinued prayers for you all and for this round of chemo to have really good results!6/11/21
- Mark DittmerWow, what a big kiddo! Great to read the update; also thanks for the prayer requests; it's an honor to be a part of your lives!6/10/21
- scott remphreyWow great news for J and so well written by you Melissa! Prayers out and best wishes on Jon's positive attitude and healing thoughts and of course to God's will!6/10/21
- Ann-Marie and Bill FunkIt is so good to learn that chemo is doing it's job. Praying for continued progress and lots more dates 💗6/9/21
- Carina AguirrePraying for you all! 💕💕6/9/21
- Lydia MobleyLove you all so dearly. So glad that you’re able to have a few normal things this week. Praying every day. ❤️6/9/21
- andrea bunnettMelissa you are so cute and funny ! Praying for you all and The Lord to continue to fill you with JOY your gratitude is spilling over 🙏🏻💚🙏🏻6/7/21
- Godfrey ChanReally happy to hear. I pray daily for your family, and will continue to do so, based on the bullet points you have down. Also loved hearing his voice back on the podcasts, his co-workers seem so happy to have him back.6/5/21
- Linda ZachryWe have been awaiting this encouraging post. Keep fighting Jon; we are praying!6/5/21
- Beverly HamPraying 6%🙌 and tolerance for the new chemo. Love the proactive measure of the "murse".6/5/21
- Janie OliverSending out love and prayers. Janie and Wendell6/5/21
- Cindy FolmarThank you for your update, Melissa! Praying for Jon and your family every single night! Love our kibby’s!🥰6/5/21
- Becky RussellWe love you & we are praying!!!6/5/21
- Emma SchartnerThere has to be someone reading this who can take a minute to photoshop this beautiful family into Milwaukee Bucks gear…6/5/21
- Merrill EliffI’m so happy for you over the last two weeks! It sounds like the medicine is working! Prayers 🙏🏻6/5/21
- Jill Jeffersonso much love and so many prayers.6/4/21
- sarah hollandMelissa, so glad to hear of the positives happening! We will continue to keep you, Jon and Jackson in our prayers and we lift mighty praise to the Lord for His steadfast watchcare. Hugs!6/4/21
- theDrip S&E Podcast NetworkSo wonderful to read the positive news from MD Anderson. Indeed! I have been selfishly pleased to hear Tjarks talk hoops again recently. He has a depth of knowledge, uncommon takes and a stillness about him that I have missed. All my love to all of you.6/4/21
- Dan McIntyreThanks for the update. I’m thankful for the small victories! Praying for many more!6/4/21
- Aurora CampbellThank you for sending us such positive thoughts, Melissa. So happy to hear that Houston wasn't entirely a bad scene and that you both were able to enjoy some good times together with doctors, friends and family! We are continuing to pray for wellness and all good things! All the best in the next couple of days as Jonathan goes for another chemo session. Hope all goes well! Love you both! Hugs and kisses for Jackson! Tita Rory6/4/21