Clayton Health Update - 7/28/25

From Darby: Hi there!! Just wanted to give a quick update because we’ve been getting questions recently - we Just finished the call about 30 minutes ago for the clinical trial that we have been waiting 2+ months for. Clayton has been completely off treatment (his CEA actually went down from 4.1 to 3.9!) during this entire time because they usually need a “wash” period where there is no chemotherapy in your system, but insurance drug that out way longer than any of us expected. I have no idea why insurance needs to be involved when you’re signing up to be a guinea pig, but apparently they do. His clinical trial doctor is Dr. Patnaik in San Antonio. She was referred to us by Dr. Shalaby and has been doing clinical trials for over 20 years. We had a zoom call with her today for over an hour and finally had some answers to what our next step would be. After talking to her, she thinks there are 2 trials Clayton would be a good candidate for, and we are the ones who get to choose which one he will do based on the requirement of each one. She is going to have 2 of her clinicians call about each of the different trials, she told us which one she’s thinks we should do, and they will go over the specifics of each one with us and what is required for each. But for both we would go for several days the first visit to do initial labs, scans etc and possibly the first treatment. Initially we would go every week for 6-9 weeks. Treatment will be done there, not here, every 2-3 weeks depending on which one we choose, and treatment days will be 8-10 hours long. They want to make sure they can monitor him after each treatment because it’s a trial, to watch for any reactions he might have. So those days for sure will be long. She will rescan him every 6-9 weeks to see the progress if there is any, which she made sure to point out that there is always the chance that there won’t be, because these drugs are still in the VERY early stages of development, one we think is just now starting human trails. So we should hear from both of them today and then we will decide which one we want to do! We both thought they would be further along in their stages than it sounds like they are, but she thinks these best fit the genetic mutation of Clayton’s cancer the best, so it’s what we’ll choose from! Please be praying we can start this soon, it’s been a long 2 months of waiting, and that the details of traveling and receiving treatment at the beginning of fall (with one kid being a senior, and 2 boys playing football!) would be as smooth as it possibly could be! Thank you for praying for us while we have been waiting for this- the waiting is always the hardest ❤️