12.20.11 – 7.18.24
Diagnosed: June 11, 2018
We had a chance to talk to Emerson about her battle with brain cancer shortly before she passed away. Her words continue to inspire us everyday.
CTDDF: We’ve been following your incredibly brave journey since you were in kindergarten! Back then you were a little sassy, loved outdoor activities and making bracelets. Now, you’re about to turn 12! What are you into these days?
EMERSON: I’m really into school and art. I love crafting, still love making bracelets and just learned how to crochet! I also love sleeping in on the weekends, country music, animals (especially elephants), my dog Stella and my new tortoise (named Luke Combs).
CTDDF: We follow your Emerson the Brave page on Facebook and are blown away by your courage and resilience. As you’ve started another journey of treatment and medications, how have you been able to juggle all of that with school and being a normal pre-teen? You’re amazing!
EMERSON: I just do what I have to do. Some days are good and some days are not so good, but I have tons of support from my teachers and school.
CTDDF: At ChadTough, we fight everyday to help discover new and better medications to battle brain cancer? How are you feeling on your current medications and how is it different from the first time you fought?
EMERSON: For my first tumor I took 5 capsules of ONC201. It wasn’t so bad and it was only once a week. Now I am doing immunotherapy every other week and have to take a new oral chemo drug once a day. I feel ok and this seems easier and nicer to take than before. I’m not sure why!
CTDDF: We were so excited to see that when you were at Mott Children’s Hospital this past July receiving treatment you were able to spend time with Aidan Hutchinson? What was that like?
EMERSON: Aidan Hutchinson was so fun, nice and so cool. He likes Luke Combs, the country singer, just like I do. We talked a lot about Luke Combs. If I ever get to meet Luke Combs I’m going to invite Aidan to come along with us. We traded t-shirts. I gave him an Emerson the Brave t-shirt and he gave me a Breathe in God t-shirt from his site.
CTDDF: Is there anyone else you’d like to meet? What are you most looking forward to doing this year?
EMERSON: I would also like to meet Kane Brown, Luke Combs, and Thomas Rhett. I’d also love to meet Keith Urban again. My grandma got me a meet and greet with him when I was 6 ½ after I was first diagnosed. That was pretty cool! I’d also like to go to Fort Myers Beach in Florida for spring break.
CTDDF: You’ve been such an inspiration to so many around the whole world. How do you stay so positive?
EMERSON: I surround myself with positive people. My family, friends and teachers really help me stay positive.
More about Emerson
Written by her mom, Ami Hoogendoorn
Emerson was a smart, sassy and loving ray of light. She loved to be outside playing basketball, tennis or softball, riding her bike and swimming in her grandma’s pool. Emerson also enjoyed drawing and making beautiful bracelets and clay figurines. When Emerson wasn’t on an adventure with her family or spending time at Grandma’s house, she was often playing with her cousins or her friends. She loved her family and friends more than anything.
Our world was shattered and our lives changed forever, when in June of 2018, Emerson was diagnosed with Diffuse Midline Glioma, after suffering headaches, double vision and extreme tiredness for several months with no relief. We had just celebrated her graduation from kindergarten, and were now afraid she wouldn’t make it until Christmas or her seventh birthday. That summer, Emerson underwent 2 major brain surgeries while in the local children’s hospital for eleven days. Emerson then began the standard 30 radiation and chemo treatments for DMG, where she lost most of her hair, lost weight and stamina.
Our family refused to take the prognosis of DMG as a death sentence and sought out further treatment, no matter what that was, to keep our girl alive. We always prayed she would be the exception to the rule and that she would be a living aid to doctors and researchers to find a cure for this disease. Thankfully, Emerson was able to join a clinical trial of ONC 201 at the University of Michigan’s Mott Children’s Hospital in Ann Arbor Michigan. Through it all, Emerson remained tough and continued to think of others before herself. She truly lived up to her nickname, Emerson the Brave. While Emerson lost her battle against the disease, our family believes there is hope and possibility for future families.
Emerson the Brave Book
Check out Emerson’s book: “Emerson the Brave: My Cancer Journey From A-Z”
Through her story — written from her hospital rooms in Michigan — Emerson offers hope, inspiration, and a unique glimpse into life as a young cancer warrior.
All proceeds from this beautiful, illustrated ABC book will be donated to the ChadTough Defeat DIPG Foundation.
