Rules [of] Engagement: Your Child Has Cancer

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I’ve lived my life as one affected by childhood cancer, and I’ve spent my professional life serving as a pediatric oncology nurse practitioner which means that part of my responsibilities have always included delivering diagnoses to children and their families. Delivery of such news is not a skill that is taught and perfected with practice. No, it is an art, a gift to be cultivated, refined, protected as it becomes a pillar of strength upon which these families lean upon as their knees buckle beneath them.

Stephie’s Rules [of] Engagement:

Rule #1: Establish the provider-patient/family relationship on truth; families MUST be able to trust you if they are to entrust their child to you

Rule #2: Acknowledge their fears [and] communicate the possibility of cancer with great compassion

Rule #3: Block your time [and] give the family your undivided attention: silence your pager [and] do everything within your power to prevent interruptions

Rule #4: NEVER walk in without a plan for what comes next; provide them with that plan in writing; these are anchor points to help keep them grounded amidst the devastation [and] chaos

Rule #5: Acknowledge how difficult it is to wait; check in on them throughout the day; inform them of delays

Rule #6: Answer their questions [and] provide them with a notepad to write questions that arise after you leave; answer the same question as if it is the first time they have asked it

Rule #7: Bring kleenex [and] allow for, do not fear silence; be present with them

Rule #8: After sharing the diagnosis with the parents and their child, outline the plan of action addressing the treatment plan [and] what needs to be done to prepare their child to start therapy

Rule #9: Always be mindful that grief descended upon them as you confirmed their worst nightmare; know your resources [Child LIFE, Social Work, Grief Counselors] and get them involved sooner rather than later

Rule #10: Begin with end in mind [a healthy, well-adjusted, self-sufficient adult] by planting [and] cultivating seeds of HOPE, FUTURE across the cancer trajectory

Delivering news of a life-threatening illness is never easy nor is it a rote script that you memorize from a textbook then apply to every child/family you encounter rather it is an art, developed and refined by clinical experience. Each child and family is unique; therefore, providers would do well to become students of them, their family dynamic, individual [and] collective ability to cope, so on [and] so forth, in order to best meet their needs across time.

The delivery of a devastating medical diagnosis is to be handled with the utmost of humility, an overabundance of compassion, and a spirit capable of appreciating the salt of each tear shed committed to not one tear ever touching the floor for each one is sacred.


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