Diagnosed with DMG in 2018, Emerson Hoogendoorn of Holland, Mi underwent 2 major brain surgeries and 30 rounds of chemo and radiation all before her 7th birthday. After joining a clinical trial for the oral drug ONC201, Emerson’s tumor began to shrink and stabilize. But this past May, she and her family received the gut wrenching news that she had developed a second kind of brain cancer. Now 11, Emerson is ready to fight for the second time. She and her family are hopeful that promising new research will once again allow her to live the life she deserves. We had a chance to talk to Emerson about her battle with brain cancer and discover how she stays so positive while facing such a difficult journey.
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.
While learning that Emerson’s cancer had returned was devastating, she and her family are ready to fight. As ChadTough Defeat DIPG Family Partners, Emerson’s family believes that through research there is hope for a bright future. The family recently hosted the 6th annual Emerson the Brave Fishbowl Auction, raising more than $20,000 for ChadTough in an effort to fund the game changing research so desperately needed to find a cure.
More about Emerson
Diagnosed: June 11, 2018
Written by her mom, Ami Hoogendoorn
Emerson is a smart, sassy and loving ray of light. She loves to be outside playing basketball, tennis or softball, riding her bike and swimming in her grandma’s pool. Emerson also likes to draw and make beautiful bracelets and clay figurines. When Emerson isn’t on an adventure with her family or spending time at Grandma’s house, you can often find her playing with her cousins or her friends. She loves her family and friends so much.
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. Luckily, in just a few months, ONC 201 shrunk Emerson’s tumor. For three years now, Emerson has taken ONC 201, and her tumor remains small and stable. She has suffered nearly no side effects and is able to live a nearly normal life as a nine-year-old, she is walking miracle. We have made it our mission to help in any way that we can to find a cure for this disgusting disease. Through it all, Emerson has always been tough, has smiled, continues to think of others before herself and has lived up to her name of Emerson the Brave. While she is still battling for her life, our family believes there is hope and possibility.