A new discovery and game changer

I posted on Facebook and Instagram a couple days ago, letting you know about Ruby's upcoming scans and need for a change in treatment since the tumors are growing. I set a time to go to the temple. Within hours, we received hopeful news. Dr. Nick called to tell us that Foundation One testing from St.Jude had come back with new info. We knew that ETV6 had mutated but not sure what it had fused with until now...NTRK3. This is a big deal!  This is a common gene mutation in infantile fibrosarcoma, but the majority of opinions still lean toward melanoma as Ruby's diagnosis.
Call it whatever you want, I just want to know if there is anything that can help.

2 drugs have recently come to trial that specifically target this gene mutation.
Entrectanib and Larotrectinib
They are still in phase 1b and phase 2. One is available at Primary's here in Utah, the other we'd need to travel for but could get it at St.Jude in Tennessee.

Today Ruby had her full body PET CT scan. Not her fav, but went as well as expected and we're home! We are so blessed to live so close, and to be HOME. I love my home and my family. Dr Nick already called and let us know that there are no new lesions, her liver is clear. There are 2 medium size tumors that have minimal growth. We are still planning for her to have a brain MRI early Saturday morning.

I pray for Ruby to have peace and comfort. For us to know what decisions to make that will be best for her. I pray that if possible, Ruby has minimal suffering. The other side of this life is something to look forward to, its the hardship and unknown until we get there that is scary.

Thank you so much for bearing this life with us. For letting us lean when we need, and buoying us up, sometimes when we don't even realize we need it.

Thank you for all you who have donated money, time, emotion, prayers, food, childcare and withstood the inconvenience of being part of our village. We love you and appreciate you.

For now we wait to hear details of how/when/where we can get her on one of these medicines and enjoy life in the meantime.