Ellie is a creative and kind-hearted second grader. She’s a social butterfly and enjoys baking, crafting, swimming, spending time with her siblings and friends and traveling.
Ellie was diagnosed stage 2 Neuroblastoma, a pediatric cancer of the central nervous system at only 11 months old. She was given an excellent prognosis and was carefully watched with surveillance scans for the following three years. Shortly after Ellie’s 4th birthday, we learned that her scans had been interpreted incorrectly since diagnosis. During those three years, our daughter’s cancer had progressed to stage IV, high-risk Neuroblastoma.
Ellie quickly began extensive treatment consisting of 6 rounds of chemotherapy, 50 days of proton radiation and 6 cycles of immunotherapy, which is the “standard of care.” Our family traveled back and forth to New York for the majority of her care, seeking the most up to date treatment options and trials. We made the trip over 40 times within a two year timeframe. Her treatment accrued significant medical bills and we reached our maximum out of pocket deductible each year, in addition to all travel costs, for which we are personally responsible. We elected to enroll in two clinical trials after the completion of her therapy, in hopes of keeping her free of cancer, as Neuroblastoma has a roughly 50% relapse rate. She successfully completed one of those yearlong trials and is 9 months into the second trial and going strong as happy 7 year old!
Throughout Ellie’s treatment, we began researching ways to support Ellie’s immune system which had been destroyed from the aggressive cancer treatment. Engaging Ellie’s oncology team in discussions about supporting her immune system, gut health, food allergies or supplements was not successful. Any hope of integrating holistic practices was quickly dismissed and ultimately left it up to us to integrate that functional knowledge and research into Ellie’s care. Blending the fields of pediatric oncology and functional medicine proved to be challenging, and one that ultimately few people were experienced with.
Extensive research exists to support the importance of harnessing the immune system to fight cancer, evaluating the role food plays in the development of inflammation and in turn cancer, specific supplements such as high-dose omega 3’s and specific therapies such as cryotheraphy and hyperbarric oxygen therapy. While the benefits are tremendous, these treatments come with a high cost. After the extensive travel our family has made for medical treatment – with each trip averaging $2,000 in travel expenses – the ability to explore these therapies has become a highly desirable, but unrealistic goal.
As we navigate our way through our daughter’s care and treatment, we are determined to use ALL the resources available to ensure her overall healing. Hope Rooted has been a support for our family by providing a grant for Ellie to access functional medicine as one of these resources.
Hope Rooted. Healing Happens Here.