A creative soul, talented artist, 90’s-music loving girl. That’s how Remy Coburn’s mom, Noble, describes this Otsego 7th grader before her cancer diagnosis in March 2024. “She would draw amazing things, sculpt elaborate masks and even taught herself how to crochet and make costumes. She loved being with her friends who she could truly shine around,” she says. 

While she still rocks out to Britney Spears and old school Eminem, Remy has lost the ability to be creative the way she loves. On March 18th, just before her highly anticipated start to tennis, she was diagnosed with a form of inoperable childhood brain cancer called DIPG - Diffuse Intrinsic Pontine Glioma. “This is a very aggressive brain tumor located on the Pons in the brainstem. It is inoperable as it grows and integrates itself into the Pons and surrounding structures. These structures are crucial for the body maintaining life so any resection or removal could have tragic results,” Noble explains. 

Unfortunately this makes her cancer terminal. And while there will never be enough time with her, she is receiving treatments that are helping and even allowed her to return to school for a bit. “There are treatments to help symptoms and hopefully prolong her life by holding off the inevitable growth. She has lost the ability to walk and care for herself. She relies on us for every basic need. She has been showing great improvement with help from all her rehabilitation therapies and treatments. Her tumor has even shown reduction in size thanks to these treatments.” She’s recently had a setback with inflammation, but they’re hopeful additional treatments will get her back to school and enjoying life. 

Her only symptoms right up until the diagnosis, were headaches which she had her whole life. An MRI in 2018 showed nothing and blood work earlier in 2024 showed low vitamin levels. But over the next few months, her speech began to slur slightly, she had balance issues and her headaches increased. When she couldn’t keep eye contact, walk, and was getting sick constantly, they went to the ER. “They did a CT and saw the lesion and immediately sent us to Helen DeVos via ambulance. There she underwent further tests and we were given the unbelievable news.” 

The symptoms were caused by increased fluid pressure in the brain. She underwent brain surgery on March 20th to relieve the pressure and again on August 13th to implant a shunt to continue to relieve pressure as the previous procedure stopped working.

“Thankfully over the last few years better treatments have been approved and implemented. With the new research on treatments, she underwent 6 weeks of intense radiation treatment and now is enrolled in a clinical trial at U of M which she began in June. The clinical trial at U of M is specifically targeted at her cancer, as it is one of the deadliest forms of childhood cancer. This trial contains the only drug that is showing any promise towards fighting this cancer,” Noble explains. The hope is that it causes a stress response in the cancer cells causing them to die. “Unfortunately this drug takes 6-8 months to begin working so it is truly a race against the clock. Her team is focused on giving us the most time possible.”

As you might imagine, Noble says this experience is the hardest hurdle to face in life. “You never think it is possible or will happen to you. You raise your child to prepare them for their future and then you receive news that rips that future from their young hands.”

Both of Remy’s parents have been off work since her diagnosis to care for her and spend all of their time with her and her younger brother. They’ve learned a lot over the last 6 months and their bond has grown incredibly strong. “We all have our days where we fall apart but we are trying to focus on the positives and enjoy our time with her.”

They remain hopeful and thankful with fundraising events like Purple Week. “Events like this mean so much to us as this trial would not be possible if not for donations and awareness. Without this trial her prognosis would be greatly reduced. This gives us more time with our daughter and hope for other families facing this or who will soon be faced with this. Awareness and fundraising for cancer research is the only way to help these families and help give these children more life.” 

They don’t know exactly what lies ahead, but they want everyone to know how much they appreciate all of the love and support for their family. “This experience, no matter how heartbreaking, has shown us how much love there is in our community. We also want to encourage every single family to not take time for granted. It is easy to get caught up in work, school, and trivial aspects of everyday life. Spend that time together and just truly enjoy and embrace each other.”

Noble also wants people to know that children with cancer are still the same as they were prior to their diagnosis. “Remy is still the same smart and funny girl she always has been. She is just trapped in a body that makes it hard for her to express that sometimes. Thankfully, Remy has an amazing group of friends and an amazing group of educators who have always seen her and not the cancer.” 

The Coburn family will be among those honored at the ceremony prior to the Purple football game on October 4th at approximately 6:45pm. To learn more about how to support Purple Week efforts and medical research, go to www.otsegops.org/purpleweek.