Update on Sebas

Last week, Michael, Naomi, Santi and Sebas flew to San Francisco for Sebas’ next set of imaging on his lungs and hand. It was a very difficult day for Sebas because he had to go under anesthesia for his MRI, and therefore he had to fast for 18+ hours. For a 4-year-old, that is very hard. On top of that, Sebas has a lot of trauma around getting scanned and we could sense he was very anxious and on edge leading up to scan day. 

But good news! We got the results and the chest CT scan was “stable”! The three lung nodules that the doctors have been monitoring have not grown or shrunk. While we were hoping that everything had disappeared, we are taking this as a win. They also didn’t see any new nodules, which is encouraging news. 

And the MRI of Sebas’ hand was clear, what a relief!  

We live scan to scan, and that is an invisible trauma that as a family we learn to live with every day. Because MEC is so rare and has never been studied, and we now know that the chemo didn’t work, the only treatment option for Sebas is surgery. And the thought of our baby needing a major surgery every few months honestly feels unbearable.  

Because his last 2 CT scans have remained stable, our oncologist is now recommending that he be scanned in 3 months, instead of 6 weeks. For the past six months Sebas has had to be scanned every 6 weeks, which has felt particularly brutal on all of us, especially Sebas. We are grateful that we now have 3 months until his next one and we can take this time to have as much fun as possible and focus on raising funds and advancing the MEC research.  

Thank you so much for all the love and support you have sent us. Sebas’ next round of scans will be in early October in CA. Please continue to keep him and all of us in your thoughts and prayers.