As parents who have walked the road of childhood cancer, we are all too familiar with the twists and turns, heartache and devastation associated with an unwelcome diagnosis such as cancer. We have found some measure of comfort and community in learning the stories of other cancer families. And so we share our journey for two reasons: to keep our daughter’s memory alive, and also in hopes that someone, somewhere will hear it and receive it like a hug, hearing us say  “we’re so sorry for your pain; you are not alone.” 

Ellie Nicole Esselstrom is the light of our lives. Our Sweet Pea. She had a smile and laugh that could melt any heart. She was a momma's girl, always full of giggles, snuggles, and leaving love notes everywhere she could. She was obsessed with horses and she loved Jesus, her family, her dog, Brodi, and her horse, Sugar. 

When Ellie was 6 years old, our world was turned upside-down. Ellie started having some abnormal symptoms- she had neck pain on and off, lost the function of her right hand, and had some troubles with her right leg. These symptoms led to the discovery of a very large spinal tumor. After surgically resecting the majority of the tumor, we got the news we had hoped for: it was benign. She would still need to undergo a year of chemo to take care of the small amount of remaining tumor and to make sure any small cells were taken care of.

The following fall, almost a year after the discovery of her spinal tumor, something else was found. Ellie’s tumor had transformed. It was no longer a benign, slow-growing tumor; it had turned malignant and aggressive. Our doctors sat us down and told us the thing that no parents should ever have to hear: this is extremely rare; no one lives; it happens quickly.

Desperate to save our daughter’s life, we tried everything. For a while, things looked somewhat hopeful- no new growth, stable tumors. Every day, the doctors couldn’t explain how she was still with us; we thought she would be the one to live. However, in the spring of the following year, the cancer stopped responding to treatment and any possible clinical trials were not taking place soon enough. On June 15, 2015 surrounded by her family, Ellie passed on to heaven to be with Jesus. 

Losing our only child, the love of our lives, left us in complete devastation. We knew immediately that we would spend our lives honoring her and helping other kids like her. A little over a year after Ellie’s passing, we spent some time away at our family’s lakeside cabin. For the first time in years, we both felt rested from time in community and the relaxing lakeside environment. Our experience inspired the vision for IWF, as we knew we wanted to give this gift of rest and community to other families affected by childhood cancer.