09/02/2025
🎗️September is Childhood Cancer Awareness Month so figured it’s time for an update. We’ve only told a handful of family and friends so far and now we are ready to share with all of you. The past couple of months have been a whirlwind. Unfortunately our happiness over clear scans was short lived. Shortly after that, Jake began having pain in his low back and an MRI revealed a tumor on his spine. To say we were devastated would be an understatement, but after processing everything we focused on coming up with a good plan of attack. Thankfully there were no other signs of cancer anywhere else.
🎗️First plan of action was killing the tumor with radiation ☢️. After one dose of radiation the tumor significantly shrunk and all his pain disappeared 🙌🏼. He went on to receive 4 more sessions of super high doses of radiation to annihilate what was left of the tumor☠️. Now that the tumor is dead he is technically considered NED again (No Evidence of Disease) 👏🏼 👏🏼But now the problem is the microscopic cancer cells floating around in his body that can’t be seen but we know are lurking just waiting to settle somewhere to grow and divide. 🦠🔬. If we don’t get rid of those the cancer will return, and each time it returns it becomes harder and harder to cure.
🎗️Now he will need chemo which will start next week 💉. The regimen we have chosen is much easier than the first time. He will not have any overnight hospital stays, he will not need a port, and he probably won’t lose his hair, and anyone who knows Jake knows that that’s all he cares about 🙄. Sounds easy enough, but unfortunately relapses are difficult to treat. Ewing sarcoma cells are crafty. They figure out a way to outsmart the chemo, so it only makes sense we need to do more.
🎗️So I reached out to some of the country’s leading sarcoma experts who are known to think outside the box 📦. After consulting with them, we decided to add them to Jake’s team, so they are currently following his case and we keep in touch frequently. At the recommendation of one of the experts from MD Anderson, we also now consult with his colleages who is an integrative oncologist. We have added several medications and integrative approaches to Jake’s regimen in the hopes that this will help the chemotherapy pack the most powerful punches to these remaining cancer cells 🥊
🎗️But there was still one more weapon I wanted for Jake. DFMO, 4 little letters with a whole lot of promise. This drug was suggested by one of the experts and has been shown to significantly reduce the chance of relapse in neuroblastoma (another type of pediatric cancer), therefore increasing survival of these patients. It stops the cancer stem cells from being able to grow and spread. This drug was studied for many years and the evidence from the clinical trials was so compelling that it finally became FDA approved. One of the leaders in this research, Dr. Sholler, believes this drug will work the same way in Ewing sarcoma. There is already some evidence that it will, but the studies are just beginning and we won’t have the proof until many clinical trials are conducted, which can take at least a good decade or so. That is too long for us to wait. If the evidence shows that this drug can significantly increase survival in Ewing sarcoma patients in about 10 years, then it will work today right? DFMO can be prescribed today but oncologists are not willing to since there’s no real proof it works yet, which makes sense. And even if one were to prescribe it insurance would most certainly not pay for it, and out of pocket it costs about $500,000 a year 💰🤯
🎗️But I don’t take no for an answer that easily 🤣. So I dragged Jake and David across the country to Penn State Medical Center in Hershey, PA (which is literally in the middle of a cornfield 🌽) to see the one oncologist that currently uses this drug in Ewing sarcoma patients. Jake was a little annoyed about the trip but I know someday he’ll understand that we’ll always go to the ends of the earth to help save his life. We met with Dr. Sholler who is not only a genius but the nicest, most compassionate human being ever. She didn’t hesitate to recommend DFMO for Jake. Not only did she prescribe it that day but she and her team are able to get insurance companies to cover it. This is a huge win! The plan is to keep him on this drug for the next 2 years, which are pills with very little side effects 💊
🎗️Now we feel that we have a solid plan in place. We have our dream team of doctors - sarcoma specialist and integrative doctors from MD Anderson, the world’s leading Ewing sarcoma specialist from Cleveland Clinic, and now the leader in DFMO research from Penn State who will all continue to be involved in Jake’s care. I consult with them regularly about everything, and they know me well now. I’m sure I annoy them way too much but they are so incredibly nice and are readily available whenever I need them. We also have our primary team here at home who will continue to do the leg work. I am confident we have everything in place that we possibly can to defeat this beast of a cancer. So now we can only wait and see….and pray that God realizes just how much we need Jake here with us, and that we still have a lifetime of memories to make 💛🙏🏼
Thankfully Jake is feeling great and energetic and has been spending a lot of time pitching again after the infection in his arm finally cleared 🙌🏼. Here’s a few pics from our recent trip to Hershey 🍫
