Patient Advocacy Patient Story

Fueling hope and healing through family-centered advocacy after pediatric brain cancer

Despite having spent nearly a decade of my career in the business side of healthcare, my #WTFix health care experience began only last year. On May 17th, 2019, my 5-month-old son was diagnosed with an aggressive form of brain cancer called anaplastic ependymoma. Thankfully my son, now approaching his 2nd birthday, is thriving, the journey was extensive, exhausting, and required an enormous amount of endurance.

I’ve spent the larger portion of the past year advocating for my son while he underwent his cancer treatment including two major surgeries, four aggressive rounds of chemotherapy, and proton therapy radiation. Like many cancer treatment experiences, there  were a number of unexpected complications from his treatment including a brain stem stroke (during his second brain surgery) and vocal cord paralysis resulting in a tracheostomy and g-tube dependency. Throughout this journey, I have become exceptionally engaged in my son’s care and rehabilitation and serve as an extension of the care he receives from his care team.

It has been eye-opening to me that, despite being previously informed on healthcare delivery and the overall mission of the patient engagement movement, I never truly realized how much that initiative is still “swimming upstream” within the current healthcare dynamics – especially in the context of complex care – until I experienced it firsthand. I am now passionately exploring ways to help ensure that all children who receive care can have the same quality of experience with or without having an engaged, advocating parent involved. My son has had exceptional outcomes because of my advocacy, but not all children are so fortunate. Our children do their part in fighting for their lives and I expect that our physicians that care for them collaboratively match their effort in creativity/artfulness, seriousness, and enthusiasm.

Over the past year, I’ve found that provider teams, while doing the best they can, are woefully unprepared for dynamic parent involvement as well. There are have been numerous near-misses over the course of my son’s care including:

  • not having a single room in the entire health system equipped to comprehensively manage the complexity of my son’s care (#WTF),
  • having a negligent discharge experience that left us without our DME or skilled nursing agency informed of our discharge and with incorrect medication orders (#WTF), and
  • not being taken seriously with on-call physician questions that ultimately resulted in my son being admitted with near-fatal hemoglobin levels (#WTF).

I don’t have a solution yet, however, the visibility and dire nature of these three occurrences have resulted in an invitation with health system leadership to advise on the family perspective as they develop an outcome-oriented complex care coordination program.

I am looking forward to attending the Patient Experience to understand what successes are occurring in the industry that can help to inform patient experience and patient engagement initiatives in the pediatric setting.

To learn more about my experience, please feel free to visit the CaringBridge site set up to chronicle my son’s journey.