Sebastian was able to go on his dream trip to Paris, France 🇫🇷 🙌🏻

His dream has always been to see the Mona Lisa and the Eiffle Tower and thank you everyone who helped make that happen for our Brave son Sebastian. Make a wish unfortunately could not, due to it being out of the country. But we definitely did not let that stop us ❤️🙏🏼We explored all of Paris and Sebastián even tried  escargot 🐌 which was definitely a funny experience. It truly was a unforgettable trip and we are so grateful. 🙏🏼

Now we are back to reality with a lot of tough decisions to make. 

CLINICAL TRIALS UPDATE! 

We received an update from the National Tumor Board of all the Clinical Trials Sebastian would be eligibal for. Unfortunately there was not a lot to choose from. We have narrowed our search down to 3. The one In Seattle we were hoping for which Is the Car-T trial has us on a waitlist, they currently are not taking any new patients, so we have decided to explore a clinical trial In Texas which is also a Car-T trial but unfortunately we won't know for sure until Sebastian's MRI on 5/2/2024 if the tumor size fits the criteria for that trial. We have an appointment 4/30 at CHOC Children's Hospital in Orange, CA for Sebastian to potentially start the Dipg/Vax Trial. There is a time limit to start that trial, if we go with it Sebastian would have to start treatment right away on 5/8. Our family is definitely feeling the pressure of choosing a trial that will be best for him. We don't feel comfortable choosing a placebo trial due to the nature of this type of brain tumor. This is very tough because as a parent all we want is for Sebastian to beat the odds of this horrible disease and be connected with the trial that hopefully will be the cure we all dream about as parents facing DMG and DIPG. His MRI to see how much radiation has helped shrink his tumor is on 5/2/24 🙏🏼

Please continue to Pray for Sebastian. We will never give up! Until then we continue to make every moment count. ❤️