Finding the Light Through Research–The Fight to End DIPG

Dear friends,

About to make a long post sharing some from inside the ropes. The following link is to an autopsy study of 3 children with DIPG. Among other significant conclusions, the study makes new suggestions on biopsying and discoveries of “previously unknown targetable pathways”. We are proud to announce that Emilie was one of the 3 children in this study. There are so many to thank that if we named any, I’m afraid we would leave someone out. That list extends from San Francisco to Houston to our own home towns. For us, making the decision to donate Emilie’s brain and tumor was both tough and easy. It started with Emilie though.

While we were at St. Jude, Emilie never balked at being a part of a study (though we always tried to avoid extra needle pokes). She always fought hard and regardless of how painful or how many sticks it took for a blood draw, never refused to stick her arm out for another.Deciding to donate wasn’t a decision we talked about early, but it was one that hung over us , looming in the back of our minds while we worked to fight and make Emilie’s time as happy as we could. But, when the time came to call an end to the fight and bring her home, we worked to set those plans in motion.

Truthfully, that was some of the hardest paperwork I have ever had to sign. I signed it and then focused on the time left with my girl. I still have the pen somewhere. Then the night came… Halloween night, 2017… Surrounding by friends and family, Emilie left us. While our hospice nurse began to take care of the arrangements to pick up her body, I took a quick walk around the block in the rain to let myself grieve for a moment. I felt like I didn’t have time for much more than that. There was still one job left to do and I wanted to be the one to take Emilie to her final appointment. This was her last chance to fight.I was full of anxiety as I had read about the need to hurry. I didn’t want to let that tumor have a chance to get away before researchers could unlock its secrets. We got Emilie loaded in the funeral van and I jumped in my car to follow. On the way, I think I called Dr. N. several times making sure we were doing the right thing, going to the right place. When we got to the morgue a dear friend was there waiting to help and support. We wheeled Emilie into the morgue and I lifted her up one last time and placed her as carefully as I could on that cold table. If I could have stayed, I would have. My final prayer was please let this all be worth it. Let them find something.I knew pieces of her tumor were supposed to go to Houston and Washington to study and attempt to grow more in an attempt to find a cure.

A year after I laid her on that table, I learned that it didn’t work. All of the tumor samples died (for lack of a better word). Part of me was heartbroken as if I failed again, but the other part of me was glad that Lord Voldetumor was gone for good. Then, out of the blue I received this paper from Dr. G. I wasn’t expecting it at all. On the one hand there was a little PTSD from the memories it brought back. But on the other, there are specific findings that come straight from Emilie’s tumor that give hope to ending this monster. To quote Princess Leia, “I only hope that when the data is analyzed a weakness can be found, it’s not over yet”.The researcher in me recognizes the small sample size in this study. But, I pray that the findings from these three brave kids makes a difference in this fight. Again, a big thank you to all who helped us make her donation possible, the researchers for their hard work, and those who funded their work. Without each of you there would never be light.

The link to the study, “Global activation of oncogenic pathways underlies therapy resistance in diffuse midline glioma,” can be found here: