Remembering Easton: A Mother’s Story of Loss and Hope

Hi! I’m Liz. I’m a mom and writer. I’m also a cancer mom. Have you ever been given a role in life you never foresaw for your future self? We all have, right? …Especially, if you are a parent.

What about a role you did not want?

No one ever thinks they will join the cancer parent club. I certainly didn’t, even after watching many close family members and friends battle this terrible disease. I never in my wildest dreams thought it would happen to one of my children. I never thought our experience with pediatric cancer would follow the path it took so drastically. I also never thought I would be writing to other parents today in a great effort to help and support others like me.

Kids are Different

The diversity of experiences among parents whose children have been diagnosed with cancer is vast. Even with my past knowledge, I still had this idea that you are simply diagnosed, treated and you either survive or you don’t. It’s not that simple. Not that being diagnosed with cancer is simple for anyone, but kids are different. This is not supposed to happen to children and when it does, the world suddenly seems out of order. Yes, children can be sick for many years, battling their cancer with trials and treatments and surgeries, but there are also many shockingly short encounters with this disease especially if the child is diagnosed at a very young age. Luckily we also have so many survival stories that give us hope and keep us moving forward towards the ultimate goal: a cure.

Not Forgotten

I would first like to share with you one of the short illness stories, that also happens to be mine. My daughter, Easton Elizabeth and her experience with pediatric cancer was brief, shocking and layered a thick veil of despair over my family. The veil is still present, although much more transparent seven years following her sudden death from a type of cancer that has been labeled as rare. What began to lift that veil for me, her mother, was the simple act of kindness from a nonprofit that wasn’t even on my radar as a previously non cancer mom. Cookies for Kids’ Cancer had heard my daughter’s story and wanted to honor her with her own “Tough Cookie” flavor. Suddenly, the grief lessened, my eyes opened and the world was just a bit brighter. She would not be forgotten.

Getting to the Bottom of it

At one point that afternoon I asked the doctors and nurses to come back into Easton’s room. I started firing off questions. Anything that I could think of that would help us get to the bottom of what was transpiring in the body of my little girl. One that I remember distinctly coming to mind is “could this be something neurological?” That seemed the only educated guess I could conjure and I had seen her symptoms before, I just couldn’t pin point where at the time in the moments of extreme duress. Yet the urgency I expected in the situation from the medical professionals caring for Easton seemed absent. Their laissez fair approach to her complete inactivity was confusing and I truly hope it served as a lesson in hindsight. To play devil’s advocate, she was an otherwise completely healthy two year old girl, so why would there be urgency?

Divide and Conquer

Prior to this, my husband and I decided to divide and conquer. The doctor we saw last had theorized that Easton had a distended bowel, which seemed to explain her severe constipation noticed in her abdominal X-ray. Her nurses had started suppositories to try to remedy the issue and if there wasn’t success by the morning, they would operate. Grant, who was six years old at the time, was at our home in the care of a friend, but we didn’t want to leave him over night. We had two children and had to think about the care for both. Since Grant was calmer in traumatic situations with my presence, we decided I would go home and return in the morning to an awake and happy girl, while my husband stayed at the hospital.

I kissed Easton goodbye and whispered in her ear to be a good girl for Daddy.

I still to this day cannot believe I left.

That night around 11:30pm, Easton would stop breathing on her own.

Why Her?

I would be woken merely hours later to my husband’s calls of distress over the phone once discovering her limp body in the hospital bed after having fallen asleep for a brief moment. It still haunts me to this day. I wish it had been me so he would be exempt from that pain. Easton was then transported to Levine Children’s Hospital in Charlotte for more tests after being placed on a ventilator. I raced to the hospital after securing care for our son in the middle of the night. There, the largest brain tumor that Levine had ever seen in a two year old child would be discovered. My panic had been correct as I had seen her symptoms in my Dad when he was first diagnosed with a brain tumor sixteen years prior. Our hopes and dreams of what the future looked like with two children were crushed. Our sweet, perfect, beautiful girl was gone and the world seemed bleak. It turned shades of gray I didn’t know existed and for awhile I closed my eyes to reality, entering into a state of shock that would last longer than expected. Her cancer, AT/RT, a rare and always fatal if diagnosed under the age of three brain tumor, would find me in my dreams nightly for months. Why her?

Why Any Child?

The bigger question is “why any child?” The silver lining is that Easton’s story is quick by comparison to a majority of pediatric cancer diagnoses. She didn’t suffer under tortuous treatment before her death. She simply fell asleep and I hold onto that thought when my grief creeps back in and the light dims. I have always felt that Easton was sent to us and this world to teach us what really matters in life, to give us hope and remind us that helping others is the most important job in the world. What about the other 40,000 children actively battling cancer in the United States? Should they be forced to suffer under toxic treatments that could take their lives if the cancer doesn’t?

Searching for a Purpose

For six months after Easton’s death I was searching for a purpose, yet I didn’t know where to look. I was new to this role, to the cancer mom world and I was finding my footing. I was also an anomaly, my daughter having been diagnosed after her death. I wasn’t connecting with other moms during treatments and recovery and hospital visits. I was on an island and not of the tropical variety. This island promised to swallow me whole if I didn’t find my way to the surface. Luckily, I literally stumbled upon Cookies for Kids’ Cancer through a girlfriend who wrote an article about their Charlotte, NC office. It felt like fate. I grabbed on and didn’t let go for quite awhile.

Finding my Way Back

I have had regression in the last two years, pushing away what initially helped me through the darkest time of my life. I didn’t want to be the cancer mom anymore. I discontinued fundraisers in Easton’s name and said no more often than yes. It felt too sad to continue to be around sick children. I felt lost once again and that speaks to the nature of being a cancer parent. It is a roller coaster in so many aspects and choosing the correct path isn’t always an option when you literally can’t see through the fog. Everyone’s experience is different and none of them are incorrect. I decided to find my way back in January of 2024 and remembered what I promised my girl before we unhooked her from the ventilator.

That I would help in her honor until my last breath.

This is my role. This is my purpose.

This is for you Tough Cookie Easton.

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About the Author:

Liz Mills is a freelance writer and artist, wife to Brandon, mother to Grant and the late Tough Cookie Easton who passed away in 2017 from a brain tumor at the age of 2. She lives in Charlotte, NC with her family and their two cats, Winnie and Bella, who are moderately well behaved. She enjoys CrossFit, traveling, watching her son run track and play basketball and helping other cancer parents navigate the world.

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