From a mother: What my child’s oncologist should know

From a mother: What my childs oncologist should know

Please let us know that we’re not alone. We realize that our doctors are not our friends, but telling us that the medical team will be sticking with us during this journey that we were never on board with, is an empowering message when we are at our most powerless.

Show us that you care about our child, too. We know that you identify our child by her diagnosis, but we identify her as our daughter. Let us know that you understand our child and tell us something about her personality that will resonate with us. Talk to our child, rather than just to us, as much as feasible.

Hold off on the scan “show and tell.” Some parents want to see the imaging of their child’s tumor. I know I did — initially. But with recurrences, seeing evidence of the tumor that I was told would ultimately take my daughter’s life was horrifying. Some doctors seemed eager to share the scans — perhaps because it gave them a reprieve from my crumpled, tear-stained face? Ask us first, rather than assume that we would want to see it.

Ban junior doctors from sitting in on an emotional conversation. If you have devastating news to break, ask residents and fellows to exit the room while we come to grips with the ramifications of what you have to say. When emotions are high and we are at our most vulnerable, we don’t want to be politely scrutinized as if we were lab rats — even if it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.

Be accessible by email if you can’t make the phone. We won’t try to “friend” you on Facebook or e-mail you pictures of our cute dog, but some of our questions are best answered by you alone. If our e-mails are short, clear and seemingly important, please respond, however briefly, even if it’s just to acknowledge that we’ve been heard.  When our messages are relayed verbally from nurse to nurse, we worry that by the time they reach you, the crux of our concern has been lost in translation.

Remember our child. If our child is cured, we are bonded to you forever, because you were the one that treated her. If our child dies, we are bonded to you forever, because you were the one that tried to save her. Our relationship with you is paradoxically as intimate as it is distant; you are part of our family and you are the stranger beside us. We know little about you — we don’t know the names of your children, what you like to do outside of the hospital, where you live — but you’ve been there in those fist-pumping moments of glory when a scan has been clear, a tumor has been successfully resected or a drug has beaten a stubborn headache. And you’ve been there when a new symptom has revealed that the prognosis is grim. You’ve witnessed us laugh and cheer and you’ve witnessed us sob.

Remember our child; we will always remember you, probably with fondness and almost certainly with gratitude. If our child has died, we recognize that while the disease ultimately triumphed and the treatment failed, you did not fail our child.

Remember her, please.

Suzanne Leigh blogs at The Mourning After Natasha.

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